Advocacy Groups

Listed in alphabetical order are organizations that offer assistance to transplant candidates and recipients with educational information, financial grants, fund raising information, and medication grants.

The following statement is noted after each organization’s name to show the type of resource assistance offered:

(Educational Information) (Financial Grants) (Fundraising Information) (Medication Grants) (Scholarships)

America Lung Assocation
(Educational Information)
1740 Broadway
New York, NY 10019
800-LUNG-USA/800-586-4872

Non-profit, voluntary health organization that offers information to people considering lung transplant, and to those individuals who are at any point in the lung transplant process. Callers can receive a fact sheet on lung transplantation and a list of transplant centers nationwide. This association can provide referrals to local support groups, and contacts with other people who have had a lung transplant or are waiting for a transplant.

American Share Foundation (ASF & ASCOT)
(Educational Information, Fundraising)
P.O. BOX 6259
Alexandria, VA 22306-0259
1-800-80-SHARE

A National Charitable Non-profit Organization that provides assistance to the public awaiting organ and tissue transplants and recovering transplant recipients, their caregivers and family members. The foundation will provide a clearinghouse for information and personal support services. The foundation will also help in enhancing public awareness for improving organ and tissue donation and transplantation. Some activities that the American Share Foundation conducts are:

Public meetings and seminars that will advance public education and awareness about organ and tissue donation and transplantation. Communication and distribution of information through the electronic media. Publication of newsletters, magazines, pamphlets and resource guides on relevant issues related to organ and tissue donation and transplantation.

The foundation is in the process of preparation of a Transplant Recipients Support Kit. The Support Kit is designed for transplant candidates, recipients and people like you. We want to help transplant candidates, recipients and caregivers by enhancing the quality of life that they share with each other. To help you take charge of your lives. The Kit contains more than a dozen useful and practical items. Each item in the kit was selected or designed to help prepare for the demands of caring for a person who has received an organ or tissue transplant. The Kit is a zippered three ring binder with pockets and contains information divided into tabbed sections regarding: A. Letters of endorsement from Johns Hopkins Medical Institutions and other organizations that support the ON-CALL Peer Support Group Services of the Foundation. B. Living with Organ & Tissue Transplantation: this section contains information published by SANDOZ Pharmaceuticals Corporation that is organ specific and was prepared with the help of transplant professionals from transplant centers around the nation. C. Vocational and Emotional Rehabilitation: this section has been coordinated to address the specific needs of the transplant candidates and recipients and to help transplant recipients with special needs to return to productive lives at home and in the workplace. D. Patient Information: this section is a convenient place to record and store important details about the transplant recipient and his or her condition. E. Transplant Caregivers Resources: this section contains items to help caregivers deal with day-to-day and long-term problems and concerns. F. Caregivers ID Card, designed to inform emergency personnel that the person identified is the caregiver of a transplant recipient. It asks the emergency personnel to check on the patient and to notify the secondary caregiver.

The Kit also addresses concerns after transplantation, medical case management, the elimination of prejudice and discrimination, health care insurance, re-employment after transplantation, financial assistance, medications, treatments and rehabilitation issues for after transplant pediatric care. The Kit will also include this Definitive Reference & Resource Guide of support services that are available to transplant recipients.

The Foundation also provides communication between former and prospective transplant recipients to share experiences and provide information on the issues faced by recipients.

Children’s Organ Transplant Assocation (COTA)
(Fundraising)
2501 COTA Drive
Bloomington, Indiana 47403
800-366-2682

National, nonprofit agency helps organize local community in fund raising for the individual family to help with pediatric transplants and related expenses. COTA also helps adults. All funds raised go to the individual, no administrative fees are collected.

National Transplant Assistance Fund (NTAF)
(Fundraising expertise and guidance, medical assistance grants, and organ donor education.)
P O Box 258, Bryn Mawr Avenue
Bryn Mawr, PA 19010
800-642-8399
E-mail: pkolff@transplantfund.org

Private, nonprofit group dedicated to providing financial, social and emotional support to patients needing any organ/tissue transplant and their families. NTAF provides modest grants for transplant related costs. Provides information on centers, support groups, and materials. Individuals may establish regional restricted funds through NTAF. Help all organ/tissue transplant patients with fund raising by providing expertise and by acting as a trust fund for monies raised.

National Organization for Rare Diseases (NORD)
P. O. Box 8923
New Fairfield, Connecticut 06812-2783
800-447-6673/203-746-8958

This organization manages a drug cost share program for individuals who cannot afford SANDIMMUNE (cyclosporine). To ask about the application process, call 800 447-6673 or 203-746-8958. Allow 8-10 weeks for eligibility to be decided.
Serves as a clearinghouse for information for over 5,000 rare disorders. This information is clearly written for the lay person. NORD can also connect patients having the same or similar illnesses with each other.

Organ Transplant Fund, Inc
(Educational Information, Medication Grants)
National Office
1027 South Yates Road
Memphis, Tennessee 38119
800489-3863

Offices located in selected states. Help candidates/recipients nationwide in obtaining transplants and after care and providing essential support and referral services. Provides clients with fund raising expertise and materials and assures that funds raised are properly dispersed. Limited emergency grants available for medications of not longer than three months duration. Administrative fee collected.

Pharmaceuitcal Manufacturers Assocation
(Medication Grants)
1100 Fifteenth Street NW
Washington, DC 20005

This association publishes the Directory of Prescription Drug Indigent Programs from information provided by member companies. The directory currently lists 59 programs alphabetically by company. Each entry details how to apply, drugs covered, and basic eligibility requirements. A free copy may be obtained by writing to PMA, at the above address. The request must be received on physician, health-care professional or agency letterhead.

The Transplant Foundation
(Educational Information, Medication Grants)
8002 Discovery Drive, Suite 310
Richmond, Virginia 23229
804-285-5115

National, nonprofit volunteer organization providing grants to post transplant recipients to offset the costs of immunosuppressive medications. The number of individuals who can receive assistance and the grant amounts are decided by total contributions received each year. The Foundation serves as a national clearinghouse for information, and an advocate for the rights of transplant recipients.

Transplant Recipients International Organization, Inc. (TRIO)
(Educational Information, Scholarships)
1735 I Street, NW Suite 917
Washington, D.C. 20006
1-800-TRIO-386

TRIO is an independent nonprofit international organization committed to improving the quality of life of transplant candidates, recipients and their families. TRIO, through a network of local chapters, serves its members in the areas of support, advocacy, awareness and education. TRIO awards $1,000 scholarships annually to transplant recipients wishing to pursue secondary education. Clearinghouse for educational materials. Referrals are made to local chapters.

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