The below resources have been curated by Experience Journals Ad Hoc Reviewers.
This information is provided as a resource and does not represent an endorsement by the Experience Journals or Boston Children’s Hospital, nor is it an assurance that the information on these sites is accurate and up-to-date. If you have any questions or concerns about your health or the health of a child, contact your own healthcare providers immediately.
Resource Categories are arranged alphabetically.
Attention Deficit Disorder Resources
A thorough list of resources for children and adults affected by ADHD, organized into helpful categories (e.g. “Basic ADHD,” “Co morbid Conditions in Children”). Also provides a list of ADHD web sites that can be viewed in Spanish.
Children and Adults with Attention Deficit/Hyperactivity Disorder (CHADD)
A non-profit organization that serve persons and families who are affected by ADHD. Designed to decrease feelings of isolation families with ADHD can sometimes feel, CHADD has many local chapters and offers support and education about ADHD to individuals, teachers, and professionals.
ADHD: A Guide for Families (provided by the American Academy of Child and Adolescent Psychiatry (AACAP)).
An informative guide for families affected by ADHD put out by the AACAP. AACAP promotes the understanding of childhood disorders and strives to help children, adolescents and families who are affected by such disorders.
The National Alliance for Mental Illness (NAMI).
A grassroots mental health organization dedicated to improving the lives of those affected by mental illness, NAMI has many local chapters across the country. NAMI provides educational information, support, and advocating opportunities for families affected by ADHD.
The ADHD News web site is designed to give support to children and adults affected by ADHD. It provides online discussion and message boards on which people can ask questions about ADHD and share their own experiences.
The National Institute of Mental Health (NIMH).
Offers current and accurate information about signs and symptoms of ADHD, treatment options, and up to date publications and resources available for ADHD.
Learning Disabilities Association of America
This web site is designed to aid parents and teachers of children with learning disabilities. It provides up to date information on learning disabilities, practical advice, and lists a comprehensive list of resources for people affected by learning disabilities.
This magazine is designed to give information and inspiration to adults and children affected by ADHD and learning disorders. Published monthly, issues of ADDitude feature articles written by clinicias for non-medical audiences.
American Academy of Allergy Asthma and Immunology (AAAAI)
The largest professional specialty organization in the United States, AAAAI strives to advance the knowledge and practice of allergies, asthma, and immunology so that patients receive the best possible care. The web site has information for both parents and health care professionals, and portions of the site can be viewed in Spanish.
National Health, Lung and Blood Institute’s National Asthma Education and Prevention Program
This program was created to increase awareness asthma as a chronic disease in patients, health care professionals, and the public, to encourage early detection of symptoms, and to manage asthma effectively. Its web site documents its achievements thus far and lists its future goals and plans.
Asthma and Allergy Foundation of America (AAFA)
One of the oldest non-profit asthma and allergy organizations, AAFA supports education, advocacy and research around asthma and allergies. It provides educational materials and practical information about how to live with asthma and/or allergies. In addition, it provides community based services and support through a national network of chapters and support groups. Finally, it organizes state and national advocacy efforts and funds research to find better treatments and cures.
United States Environmental Protection Agency’s Web Site on Asthma
Striving to decrease exposure to indoor asthma triggers, this web site provides a list of some of the most common indoor asthma triggers and where they are often found. In addition, the site provides basic information on asthma, media awareness campaigns, scientific research on asthma, and community outreach opportunities.
Allergy and Asthma Network Mothers of Asthmatics (AANMA)
AANMA focuses on providing both current and comprehensive knowledge about asthma and allergies. Its web site provides asthma statistics, tips from families living with asthma, and links to the many publications AANMN sponsors.
American Lunch Association
To access the asthma portion, click on the label at the top of the page. The asthma section contains asthma information for both adults and kids, notifies viewers of advocacy opportunities and provides a helpline number for people with questions about asthma to call.
Maintained by the American Lung Association, Asthma Busters is an online club for kids with asthma between ages seven and fourteen.
The Canadian Lung Association
The Canadian Lung Association’s asthma website provides information on asthma medicines, asthma and exercise, asthma and school, asthma and pregnancy and other asthma related topics. It also provides information on the psychological aspects of asthma.
Community Asthma Initiative, Boston Children’s Hospital
The Community Asthma Initiative at Boston Children’s Hospital provides health education, home assessments, case management, primary care and community outreach services to children and families who live in Boston urban areas.
The Sibling Support Project
The Sibling Support Project is a site for the siblings of people who have special health, developmental, or mental health concerns. It provides information, links to resources, as well as listservs for adult and child siblings.
The Dougy Center for Grieving Children and Families
The Dougy Center is a nationally renowned center for work with grieving children and teens. It has information for adults to help young people, as well as information and activities for children and teens to understand their grief. Information is also provided to assist with the grief experience if someone at the child’s school dies.
Grief Net is a large site for both adults and children. It specializes in “email support groups” where peers provide support, while also being monitored by trained therapists and a licensed psychiatrist.
Centering Corporation and Grief Digest Magazine
This magazine offers a comprehensive book and resource list to families, caregivers, and medical staff.
The Compassionate Friends
The Compassionate Friends is a national organization that offers monthly support groups in your area along with quarterly newsletters and pamphlets. Contact the national office to find the chapter in your area.
The Candlelighters Childhood Cancer Foundation
CCCF is an international peer support group for parents of children who have or have had cance.
The Sibling Connection
The Sibling Connection is a non profit organization based in St. Louis, MO that provides useful articles and resources for bereaved siblings.
Mourning Our Brothers and Sisters
This is an online group that connects adults wo have experienced the death of a sibling.
Good Grief Resources
Good Grief is a website that offers comprehensive information, support groups, and resources to bereaved adults and children.
Social Work Therapy Referral Service
Free confidential telephone referral service servicing most down in MA. Helps you find a skilled individual family or group therapist.
National Hospice Contact
New England Hospice Contacts
Massachusetts: The Hospice Federation of MA: (781) 255 7077
Rhode Island: Home and Hospice Care of RI: (401) 727 7070
Connecticut: Hospice Council of CT: (203) 238 1922
New Hampshire: NH Hospice and Palliative Care Organization: (603) 225 0900
Maine: Maine Hospice Council: (207) 626 0651
Vermont: Hospice Council of Vermont: (802) 229 0579
The National Institute of Neurological Disorders and Stroke, site on Cerebral Palsy
This provides information and gives links to studies recruiting patients with cerebral palsy. It also lists organizations for cerebral palsy.
Online (email) support group with hemiplegic cerebral palsy
Children’s Hemiplegia and Stroke Association
Online support for children with hemiplegic cerebral palsy, hemiplegia, infant stroke, or childhood stroke.
CPParent Resource Center
An online support group for parents, caregivers, and others who work with children with cerebral palsy.
An interactive site about living with cerebral palsy for kids
Federation for Children with Special Needs
Information and referral services on issues concerning parenting, child, and family health and special education.
Institute for Community Inclusion ICI
ICI offers training, and provides assistance to organizations to promote inclusion of people with disabilities in school, work, and community activities.
National Easter Seals Society
Provides useful information on available resources for children and adults with disabilities.
The Boston Center for Independent Living Inc. (BCIL)
A non profit organization that provides services to people with disabilities, including peer support, skills training, and PCA services in order to enhance the independence of individuals with disabilities.
Lemon The Duck by Laura Backman: A picture book based on the true story of Lemon, a Pekin duck with a disability who was born in an elementary school classroom. Children in the classroom work together to help Lemon thrive, and come to understand that Lemon’s difference does not make her any less special (reading level 4 8 years).
I Raise My Eyes to Say Yes by Ruth Sienkiewicz Mercer and Steven B. Kaplan: The autobiography of Ruth Sienkiewicz Mercer, a woman with cerebral palsy who communicated through eye movements and facial expressions.
Yoga for the Special Child: A Therapeutic Approach for Infants and Children with Down Syndrome, Cerebral Palsy, and Learning Disabilities by Sonia Sumar: Provides a yoga program designed to increase cognitive and motor skills in children with learning and developmental disabilities.
Families for Depression Awareness
A non-profit organization dedicated to helping families recognize and cope with depressive disorders. The organization provides education, outreach, and advocacy to support family and friends.
Parent/Professional Advocacy League
PAL is a Massachusetts statewide organization that provides support, education, and advocacy around issues related to children’s mental health.
National Institutes of Health – Depression
The National Institute of Mental Health’s online information page on depression.
Child and Adolescent Psychiatry On-Line
An online collection of research papers, case reports, meta-analyses, review articles, computer programs and other media on the subject of child and adolescent psychiatry.
Focus Adolescent Services
An online resource page for depressed adolescents and the families and friends.
School Psychiatry Program
Provides a wide range of information about various mental health issues for children and adolescents, including rating scales for psychiatric conditions, advice for parents, and more.
National Child Traumatic Stress Network
An organization dedicated to addressing the needs of children who have endured trauma. This website provides information about trauma, recent research on children’s mental health, and hotlines for children in crisis.
About.com – Childhood Depression
About.com’s resource page on childhood depression featuring several articles and helpful links.
The American Psychological Association’s psychologist locator lets users enter their zip code or city and state to generate a list of area psychologists.
The American Academy of Child and Adolescent Psychiatry’s database of psychiatrists across the United States, Canada, and surrounding territories.
The American Diabetes Association
The ADA’s website is a helpful resource on diabetes, providing information on the disease and relevant research. It also gives tips on nutrition and recipes, as well as weight loss and exercise. It includes information on community programs and local events, and its “Recently Diagnosed” section offer help to those dealing with emotions that may emerge with an initial diagnosis.
The Challenge of Childhood Diabetes
This website serves as the homepage for the 2006 book The Challenge of Childhood Diabetes: Family Strategies for Raising a Health Child. Author Laura Plunkett, whose son was diagnosed with juvenile diabetes, describes her family’s struggles and successes, in hopes of passing on wisdom to all who encounter the condition. On the website, parents can read Laura’s advice on diet and nutrition, as well as purchase the book.
Boston Children’s Hospital: Diabetes Program
The diabetes program at Boston Children’s Hospital is dedicated to holistic treatment of children with diabetes. The website posts current research, provides introductions to the faculty involved in diabetes treatment, and allows parents to book appointments for their children.
Boston Children’s Hospital: Type 2 Diabetes Program
This branch of the Children’s Hospital website focuses on Type 2 Diabetes, the most common type of diabetes. It introduced the pediatricians who specialize in treating the condition, posts current research, and describes lifestyle changes that children with Type 2 diabetes can make to improve their health.
Boston Children’s Hospital: The Optimal Weight for Life (OWL) Program
The OWL program is a nationally recognized, interdisciplinary program designed to help kids maintain a healthy weight. It specializes in prevention and treatment of Type 2diabetes. Parents can use the website to learn more about the OWL Program, meet the clinicians, and request and appointment.
Boston Children’s Hospital: Diabetes Insipidus
Diabetes insipidus is a condition in which the body fails to produce adequate amounts of the antidiuretic hormone (ADH), causing inability to retain enough water. This website thoroughly describes many facets of the condition.
Boston Children’s Hospital: Intermediate Care Program (ICP)
The Boston Children’s Hospital ICP provides intensive nursing to children with a variety of conditions, including diabetic ketoacidosis. The website further describes the Intermediate Care Program, and links to other useful resources from Children’s Hospital.
Joslin Diabetes Center
The Joslin Diabetes center, affiliated with Harvard Medical School, is a diabetes research center, clinic, and education provider. This site provides tools to understanding diabetes, including articles on managing diabetes, online classes, and key words and phrases to know. It also provides discussion boards for adults and teens.
Juvenile Diabetes Research Foundation
The Juvenile Diabetes Research Foundation is aimed at supporting juvenile diabetes research with the hopes of finding a cure for diabetes and its complications. The JDRF’s website provides access to an Online Diabetes Support Team and information on managing the disease. The JDRF Kids Online site (www.kids.jdrf.org) features resources for children such as pen pals, artwork and stories.
National Center for Chronic Disease Prevention and Health Promotions
The CDC helps visitors to learn about diabetes and issues such as being active and eating right. It offers information for the public and professionals on statistics and research related to diabetes.
National Diabetes Education Program
The NDEP is an effort by the National Institutes of Health, the Centers for Disease Control and Prevention, and over 200 organizations, both public and private. The Program’s website offers its readers information about diabetes and pre-diabetes, as well as resources for health, education, and business professionals. It also offers descriptions of the partnership’s awareness campaigns and information on how to start a campaign in one’s own community.
National Diabetes Information Clearinghouse (NDIC)
The NDIC is a service of the National Institute of Diabetes and Digestive and Kidney Diseases and part of the National Institutes of Health. This website provides a clear introduction to diabetes, as well as information on treatments, complications, and access to research reports. The site is designed to help patients, health care professionals, and the general public to learn about and understand the disease. Information is also provided in Spanish.
U.S. Food and Drug Administration – Diabetes
The FDA website on diabetes offers information on how to lead a healthy life with diabetes, such as disease management and tools, as well as tips on meal planning. It los provides links to recent news about diabetes.
Clara Barton Camp (North Oxford, MA)
A diabetes camp for girls and young women ages 6-16
Camp Kyle (Fall River, MA)
A diabetes camp for children, siblings, and their friends ages 5-14
Centers for Disease Control and Prevention: Violence Prevention
National Center for Children Exposed to Violence
National Institute of Mental Health: Children and Violence
Substance Abuse and Mental Health Services Administration: Safe Schools, Healthy Students
The Three Doctors
Authors of The Pact and We Beat the Streets
Youth Violence: A Report of the Surgeon General
Boston Medical Center: Child Witness to Violence Project
Boston Youth Violence Strike Force
Call: (617) 343 4444
Cambridge Health Alliance: Victims of Violence Program
Children’s Hospital Boston: Child Protection Program (including AWAKE)
Fenway Community Health: Violence Recovery Program
Garden of Peace: A Memorial to Victims of Homicide
Harvard Youth Violence Prevention Center
Living After Murder Program
Call: (617) 541 3790
Louis D. Brown Peace Institute
Massachusetts Office for Victim Assistance
Mass Office of Health and Human Services: Violence Prevention and Intervention Services
MSPP Interface Referral Service
Suffolk County Sheriff’s Department: Victim Services Unit
The Trauma Center at Justice Resource Institute
American Speech-Language Hearing Association
ASHA’s focus is to advocate an advance communication in individuals with speech, language, and hearing disorders. Their site contains resources about communication disorders, navigating health insurance, access to scientific journals and professional development for people interested in working in the field. There is also an on-line directory to search for certified professionals in your area.
The Hearing Loss Association of America
HLAA is the nation’s leading organization representing people with hearing loss. The HLAA supports individuals with hearing loss by providing information, education, support and advocacy. They have over 200 chapters across the nation that hold regular meetings for individuals to attend. Find a chapter near you
Very user friendly site that explores al different health topics including hearing loss in children.
The Children’s Hearing Institute
The Children’s Hearing Institute concentrates its efforts in three areas: support for education, clinical services, and research. They provide extensive information on cochlear implants and other assistive devices, run educational conferences and workshops, and provide funding for research. Available in English and Spanish
National Institute on Deafness and Other Communication Disorders
NIDCD conduct and support biomedical and behavioral research training on hearing loss. Their focus is to acquire new knowledge to help prevent, detect, diagnose, and treat disease and disability. Their site lists recent research done on hearing loss, funding for research and types of grants, and health information on various communication disorders.
American Association of the Deaf-Blind
AADB is a national consumer organization of, by, and for deaf-blind Americans and their supporters. Members focus on advocacy and outreach with the “deaf-blind” community. “Deaf-blind” includes all types and degrees of dual vision and hearing loss. AADB is a non-profit organization governed by mostly deaf-blind individuals. AADB receives funding from grants, membership fees, and tax-deductible donations.
National Association of the Deaf
NAD is a civil rights organization shaped by deaf leaders. NAD also represents the United States to the World Federation of the Deaf (WFD). NAD covers many topics including early intervention, education, employment, health care, technology, telecommunications, youth leadership, and more. Their site also includes up to date news affecting the deaf community.
National Black Deaf Advocates
This organization was established in 1982 to represent deaf black individuals in the United States. They focus on gaining leadership in policy-decision making activities
American Society for Deaf Children
A national non-profit organization that focuses on equal rights, education, and social and emotional development for deaf children. They have advocacy resources, links for opportunities and conferences for deaf children, and monthly blogs. They also send out their own newsletter.
Alexander Graham Bell Association
AG Bell is an international membership organization of parents of children who are deaf and hard of hearing, adults with hearing loss and professionals. This comprehensive web site provides general hearing loss information, book recommendations, financial aid and scholarships, and action alerts on legislative developments. Separate sections support teens with hearing loss (an interactive website devoted to teen issues and hearing loss), adults with hearing loss (supporting action on the local and national level and the mentoring of young children who are deaf or hard of hearing) and parents (providing emotional support, information, referral to appropriate services and advocacy)
Association of Late-Deafened Adults
This association is comprised of individualts who became deaf after the time of development of speech and language. The web site provides resources and information and promotes advocacy awareness of the needs of deafened adults. Features offered include a list of regional chapters and self-help support groups, an email board and discussion lists, volunteer opportunities, conference information and more.
Beginnings for Parents of Children Who Are Deaf or Hard of Hearing, Inc.
This non-profit organization was established to provide emotional support and access to information as a central resource for families with deaf or hard of hearing children, age birth through 21. Topics include early intervention, communication options, audiology, assistive technology, and school issues.
Better Hearing Institute
The Better Hearing Institute is a non-profit organization devoted to raising awareness of hearing health issues, treatment options, and the prevention of hearing loss. Their web site provides information on hearing loss, hearing solutions and an extensive resource guide including information on adult support groups, advocacy, assistive technology, education, employment, financial assistance, scholarships and more.
Deafness Research Foundation
The Deafness Research Foundation is a voluntary health organization dedicated to research on hearing loss and promoting lifelong hearing health as a national priority. Their website contains articles on cochlear implants and other hearing loss issues, a resource directory and a soon to be added resource directory by state.
Harvard Medical School Center for Hereditary Deafness
Provides information on hereditary deafness, facts about genetic testing, and information on specific genetic tests.
Established to increase public awareness of hearing impairment, this website covers many issues concerning hearing impairment including practical information for the hearing-impaired, prevention of hearing loss, information for relatives and colleagues of the hearing impaired, statistics about hearing loss and consequences of hearing loss.
John Tracy Clinic
John Tracy Clinic is a private, non-profit education center founded by Louise Treadwell Tracy in 1942. The web site provides information on cochlear implants, deaf education resources, parent distance education/correspondence courses, summer sessions for families, and a FAQs section. Information is also available in Spanish.
League for Hard of Hearing
This is the oldest hearing rehabilitation and human services agency in the world for infants, children, adults and seniors who are hard of hearing, deaf and deaf-blind, and their families. Their web site offers information on hearing loss, frequently asked questions, publications and tapes, and links to further information.
(SEE) Center for the Advancement of Deaf Children
A non-profit organization established to work with parents and educators of hearing impaired children. The website provides information on SEE (Signing Exact English), the causes of deafness, parent’s information, research articles, and a bulletin board.
American Heart Association
Easy to read medical information and pictures on congenital heart defects and children.
Baby Hearts Press
We provide books and information for parents, teens, children, nurses, doctors, social workers, and other medical caregivers in a language that is easy to understand and read.
Congenital Heart Information Network
Congenital Heart Defects.com
Heart and Coeur
This international website provides a large collection of sources of information and support for individuals and families facing congenital heart disease, and also contains a congenital heart disease and cardiology forum.
Kids With Heart
Providing support, education and information for families of children and adults with congenital heart defects and acquired heart disease.
Massachusetts Family TIES (Together In Enhancing Support)
The National Information Center for Children and Youth with Disabilities
A national information and referral center that provides information on children and youth with disabilities
Check out the Kidzone and Parent’s Place to learn about the heart, ask questions, and meet other families.
Chron’s and Colitis Foundation of America
General information as well as a listing of local events, support groups, and chapters for people with IBD. This site also has parent and child guides on living with IBD, informational brochures and an excellent list of recommended books.
North American Society for Pediatric Gastroenterology, Hepatology and Nutrition
Informational pamphlets for families, online book chapters and an interactive page for children teaching them about the digestive system with pictures and test. NASPGHAN also offers a personal IBD notebook through its site, which contains important information for families and is helpful for storing information about a child’s disease.
Center for Families at Boston Children’s Hospital
A large collection of articles, webcasts and other resources about Chron’s disease. This site also has online forums on various health conditions.
KidsHealth is a large website providing doctor-approved health information about children and adolescents. The Site has separate areas for kids, teens and parents, and presents information about IBD and other illnesses to each group in an accessible format.
NIH – The National Digestive Disease Information Clearinghouse
www.digestive.niddk.nih.gov/ddiseases/pubs/crohns / www.digestive.niddk.nih.gov/ddiseases/pubs/colitis
Factual information on the causes, symptoms, diagnosis and treatment of Crohn’s disease and ulcerative colitis.
The Creative Colitis Cookbok
A collection of 100 low-fiber, non-dairy recipes.
Learning Sickness: A Year with Crohn’s Disease A personal narrative about learning how to live with a chronic illness. The author talks about Crohn’s Disease affected his life and perspective and how he copes with the condition.
Straight from the Gut A Patient-Centered guide that covers inflammatory bowel diseases, state-of-the-art treatments, managing symptoms, and coping with family, employment, and insurance challenges. Includes stories and advice from over 40 teens and adults with IBD and their families.
Balanced for Life
This website provides helpful tips on how to lead a healthier, more balanced life through improved nutrition, increased physical activity, and better health and fitness education.
America Scores hopes to inspire children in urban areas to exercise both their minds and their bodies through soccer, creative writing and community service. They hold programs in ten major cities throughout the country that cater to underserved communities.
Body Mass Index Calculator
This website contains the National Heart, Lung and Blood Institute’s Body Mass Indicator calculator. It is an easy-to-use tool that determines if you are a healthy weight for your height. In addition, the site provides information about what BMI calculations mean for a person’s overall health.
The Mayo Clinic Healthy Living Website
This website is designed to give accurate and helpful information about living a healthier life. It provides nutrition information, menus, fitness assessments and fitness information.
The American Obesity Association
The American Obesity Association is an education and advocacy group focusing on obesity n children and adults. The “My Story” section features people’s accounts of their own experiences. Also, the “Obesity and Health Insurance” fact sheet tackles the sometimes confusing issue of health insurance for weight loss treatment, and contains advice on how to seek reimbursement for these services.
The New Food Pyramid
Created by the Center for Nutrition Policy and Promotion, an organization of the U.S. Department of Agriculture, the new food pyramid provides customized guidelines and tips for healthy eating based on recent nutrition research.
The Surgeon General’s Call to Action to Prevent & Decrease Overweight
The Surgeon General’s website was designed to give parents up-to-date information concerning childhood overweight, such as how to talk to a child about his/her weight and how to change the way a family eats.
This site provides a list of different types of exercise and a calculator that determines how many calories are being burned during exercise given an individual’s weight.
KidSource: Helping Your Overweight Child
KidSource is a website dedicated to providing in-depth and timely education and healthcare information that will make a difference in the lives of parents and children. They provide information on how parents can help overweight children and aid them in making lifestyle changes.
American Council on Exercise: Operation FitKids
Recognizing the problem of childhood obesity and the increased need for children to learn about the dangers of being overweight, the American Council on Exercise is offering a new, free edcucational tool – Operation FitKids ™ Youth Fitness Curriculum – that can be directly and easily integrated into the elementary classroom.
Preventing Childhood Obesity: Health in the Balance
The Institute of Medicine Committee on Prevention of Obesity in Children and Youth has developed a comprehensive national strategy that recommends specific actions for families, schools, industry, communities, and government. The committee’s findings and recommendations are described in the report and in fact sheets.
The United Health Fonudation
A website by the United Health Foundation focusing on assessing overweight and beginning the weight loss process.
Max’s Magical Delivery: Fit for Kids A DVD by the US Department of Health and Human Services and the Agency for Healthcare Research and Quality addressing childhood overweight. Max’s Magical Delivery: Fit for Kids is a fun, interactive DVD targeted to children ages 5-9 and their families. It includes diet and physical activity suggestions and a section for the parents on small achievable steps they can take to encourage healthy habits in their children and themselves. This DVD can be ordered free of charge
A page of links to several different areas related to urinary catheterization. Subjects include descriptions of the urinary system, step by step catheterization instruction for both boys and girls, and catheter home care. In addition, this page provides links to information about Mitrofanoff catheterization, as well as various diagnostic procedures used for urological problems.
The National Association for Continence
The National Association for Continence is an organization that aims to improve the quality of life for people with incontinence by providing information about causes, prevention, diagnosis, and treatments for incontinence. It provides an overview of what incontinence is, what the different types are, and warning signs for incontinence.
Boston Children’s Hospital: Urodynamics
This website talks about the various types of urodynamics tests and what they consist of, what doctors can learn from these tests, and what parents can do to prepare their child for testing.
Boston Children’s Hospital: Dysfunctional Voiding
This website describes the urinary tract and what happens during normal voiding, provides a definition for dysfunctional voiding, and describes the various diagnostic tests and treatments for people with dysfunctional voiding.
Boston Children’s Hospital: Posterior Urethral Valves (PUV)
This website provides information about various aspects of PUV, such as frequency of the condition, methods of diagnosis and treatment, and long term outlook for those born with PUV.
The Association for Bladder Exstrophy
The Association for Bladder Exstrophy Community is a support network made up of people with different types of bladder exstrophy. It provides numerous resources such as articles, books, and videos on bladder exstrophy, as well as contact information for various support groups around the world.
Boston Children’s Hospital: Neurogenic Bladder
This website answers some common questions about neurogenic bladder, such as what it is, what causes it, and provides information about diagnostic tests and current treatments.
Boston Children’s Hospital: Spina Bifida
This website provides information on spina bifida, including a description of the different categories of spina bifida, potential causes and warning signs for the condition, and information about diagnostic tests and current treatments.
The Spina Bifida Association
The Spina Bifida Association website provides a tremendous amount of information about spina bifida. It covers a variety of topics such as frequently asked questions about frequency and risks for the condition, describes past and present research, and addresses common issues such as transportation and financial age.
United Network for Organ Sharing
A private, non-profit organization that manages the national waitlists for all organ types and matches donors to appropriate recipients. It not only educates professional groups but the public as well on the importance of organ donation.
Transplant Recipients International Oragnization
TRIO is a non-profit organization committed to providing support, awareness, education and advocacy for transplant recipients and their families and for donor families.
National Foundation for Transplants, Inc.
A non-profit organization that assists transplant candidates and recipients nationwide in obtaining transplants and follow up care. Provides essential support and referral services and patient advocacy for transplant candidates/recipients and their families. Provides clients with fund raising expertise and materials. Limited emergency grants are available for medications and transplant related expenses.
Transplant Living: United Network for Organ Sharing
Information and practical advice for people before, during and after an organ transplant. The site contains organ facts, medication information, lists of transplant centers and support group meetings, and other resources.
National Institution of Allergy and Infectious Diseases
Facts and news about organ transplantation, with a helpful transplant guide and transplant organization list
New England Organ Bank
NEOB is the oldest independent organ bank in the United States. This organ procurement organization (OPO) services six New England states and works in conjunction with the United Network for Organ Sharing (UNOS). NEOB is an intermediary for correspondence between the donor families and transplant recipients.
Cystic Fibrosis Foundation
A non-profit organization that provides comprehensive information and resources to patients living with Cystic Fybrosis. This site contains treatment information, tips on staying healthy, as well as useful guides.
American Heart Association
Information on a variety of heart diseases and conditions including congenital heart defects, with patient information sheets and a useful collection of resources on children and heart disease.
American Liver Foundation
Voluntary agency dedicated to fighting liver disease through research, education and patient self-help groups. Liver health information, patient stories, information about transplantation, and links to regional chapters.
National Kidney Foundation
Information for parents, nutrition guidelines, resources for living donors, and other resources.
American Association of Kidney Patients
Includes a patient plan, developed by kidney patients that serves as a guide to the different phases of the kidney transplant process with checklists and books for each phase.
Children’s Liver Association for Support Services
C.L.A.S.S. provides access to programs and services like parent patching and a telephone helpline, as well as information for parents, tips on caring for your child, and a collection of personal stories.
American Organ Transplant Association
A private non-profit group dedicated to helping transplant recipients through the periods immediately prior to and after transplant. AOTA also provides reduced or free travel fares to transplant families, and assists with patient fundraising. The site provides information on fundraising, medication assistance, and patient support groups, as well as a member newsletter.
Children’s Organ Transplant Association
A national non-profit agency working to make life saving organ transplants accessible to all. COTA works with individuals of all ages to arrange the necessary funding for transplant related expenses.
National Transplant Assistance Fund
Offers fundraising guidance to patients’ families and friends. Awards matching medical assistance grants to eligible transplant candidates. Prints and distributes organ donor awareness materials.
American Kidney Fund
Provides limited grants to needy dialysis patients, kidney transplant recipients, and living kidney donors to help cover the costs of health related expenses, transportation and medication. Provides information and support for kidney donation and transplantation, as well as general education and information on kidney disease.
Medic Alert is a non-profit health organization that provides 24 hour emergency assistance.
Angel Flight, Inc. and AirLifeLine
www.angelflight.com / www.airlifeline.org
Useful resources for patients who need to arrange air travel to a hospital, Angel Flight and AirLifeLine provide free air transportation to medical patients with limited financial means.
Helping Your Child With Medical Experiences: A Practical Parent Guide
Advice on preparing your child for a medical procedure or hospitalization, and on coping with your child’s procedure or hospitalization.
A website with collections of stories from recipients and donors of different organs at different stages of the transplant process. This site includes descriptions of useful articles and book on donation, medication and other topics , including books for children.
A lung transplant organization dedicated to providing information and support to transplant recipients and their families. Their website contains information on transplant financing, diet and exercise information, resources for parents and ways to connect with other transplant recipients.
A website dedicated to educating the public about organ transplantation and donation. The site includes a series of stores from organ donors and recipients, as well as an “Interactive Body” section about how transplantation works.
A multimedia website dedicated to bringing together the fields of entertainment, technology and pediatric healthcare, the Starbright Foundation site has videos, comics, online communities and other resources for children with chronic illnesses and their families.
Organ Transplants: Making the Most of Your Gift of Life A Patient Centered Guide that covers the decision to have a transplant, screening, matching and the waiting period, living with a transplant, and emotional responses and support. Includes stories and advice from dozens of patients, family members, medical caregivers and transplant activisits.
A support group for people with facial differences
CLOVES Syndrome Community
Provides information and resources, fosters a supportive community, provides financial assistance and supports research
Cloves Syndrome Foundation
Supports research and provides information on CLOVES
Provides support, resources, education, financial support and more for people with craniofacial differences
The Foundation of Faces of Children
Provides information and resources for people with craniofacial differences.
Greater Boston Lymphedema Netowrk
Provides support, information and advocacy in the hope of improving the quality of life for those with lymphedema
Lymphangiomatosis & Gorham Disease Alliance
Provides disease information, patient resources, support, and research support for those with lymphangiomatosis and Gorham’s disease
National Lymphedema Network
Provides education and guidance to lymphedema patients, healthcare professionals, and the general public
Proteus Syndrome Foundation
Founded to educate, support and raise money for grants and research towards finding a cure for Proteus Syndrome.
The Sturge-Weber Foundation
Acts as a clearinghouse of information on all aspects of Sturge-Weber syndrome, Klippel-Trenaunay syndrome and port wine stains.
Vascular Birthmarks Foundation
Provides educational and treatment information on vascular malformations
VHL Family Alliance
Dedicated to improving the diagnosis, treatment, and quality of life for VHL (Von Hippel-Lindau Disease) patients and their families.