Links

United Network for Organ Sharing. A private nonprofit 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.
www.unos.org

Transplant Recipients International Organization. TRIO is a non-profit organization committed to providing support, awareness, education and advocacy for transplant recipients and their families and for donor families.
www.trioweb.org

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.
www.transplants.org

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.
www.transplantliving.org

National Institute of Allergy and Infectious Diseases. Facts and news about organ transplantation, with a helpful transplant guide and a transplant organization list.
www.niaid.nih.gov

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.
www.neob.org

Cystic Fibrosis Foundation. A non-profit organization that provides comprehensive information and resources to patients living with Cystic Fibrosis. This site contains treatment information, tips on staying healthy, as well as useful guides.
www.cff.org

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.
www.americanheart.org

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.
www.liverfoundation.org

National Kidney Foundation. Information for parents, nutrition guidelines, resources for living donors, and other resources.
www.kidney.org

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.
www.aakp.org

Children’s Liver Association for Support Services. C.L.A.S.S. provides access to programs and services like parent matching and a telephone helpline, as well as information for parents, tips on caring for your child, and a collection of personal stories.
www.classkids.org

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. This site provides information on fundraising, medication assistance and patient support groups, as well as a member newsletter.
www.a-o-t-a.org

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 and related expenses.
www.cota.org

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.
www.transplantfund.org

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.
www.akfinc.org

Medic Alert. Medic Alert is a non-profit health organization that provides 24-hour emergency assistance.
www.medicalert.org

Angel Flight, Inc. and AirLifeLine. 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.
www.angelflight.com; www.airlifeline.org

Center for Families at Children’s Hospital Boston. A group dedicated to helping families find the information and resources they need to understand their child’s medical condition and take part in his or her care.
http://www.childrenshospital.org/patientsfamilies/Site1393/mainpageS1393P4sublevel43.html

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.
PDF

Family Village. A global community integrating information, resources, and communication opportunities for the chronically ill and their families. www.familyvillage.wisc.edu

MUMS National Parent to Parent Network. A national Parent-to-Parent organization that provides support to parents in the form of a networking system that matches them with other parents whose children have the same or a similar condition.
www.netnet.net/mums

TransWeb. A website with collections of stories from recipients and donors of different organs at different stages of the transplant process. The site includes descriptions of useful articles and books on donation, medication and other topics, including books for children.
www.transweb.org

Second Wind. 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.
www.2ndwind.org

“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 activists. Available for purchase at www.oreilly.com/catalog/organtran/

Organtransplants.org. A website dedicated to educating the public about organ transplantation and donation. The site includes a series of stories from organ donors and recipients, as well as an “Interactive Body” section about how transplantation works.
www.organtransplants.org/

UCLA Neuropsychiatric Institute
UCLA’s multidisciplinary institute of human neuroscience, which includes the departments of Psychology and Psychiatry and Behavioral Sciences.
www.npi.ucla.edu/

Starbright Foundation
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.
www.starbright.org

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