Advocacy Organizations List

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A professional organization of over 50,000 practitioners dedicated to providing services to individuals with health conditions that limit their participation in activities of daily living and life.
The Carcinoid Cancer Foundation is the premiere resource, nationally and internationally, for current and comprehensive information about carcinoid cancer and related neuroendocrine tumors. The Medical Director of the Foundation is Richard R.P. Warner, MD, one of the world's leading carcinoid specialists. The mission of the Foundation is REACH for a Cure -- Research, Education, Awareness, with Compassion and Hope. For more information about these rare cancers, contact the Foundation at 888-722-3132. Questions are also answered by e-mail, with a form available on the Foundation's website.
The MLD Foundation offers support for families worldwide. Our motto, "We C.A.R.E." emphasizes our goals of facilitating Compassion for families, increasing Awareness, influencing Research, and promoting Education for Metachromatic Leukodystrophy.
Phone: 503-656-4808
Myotubular Myopathy (MMT) is a rare muscle disorder that causes muscle weakness and associated medical complications.
Our mission is to serve individuals with sickle cell disease and their families in the Washington, DC metropolitan area.
Advocacy for Patients with Chronic Illness, Inc. provides FREE information, advice and advocacy services to patients with chronic illnesses in areas including health and disability insurance, Social Security disability, employment discrimination, school-based accommodations, and resource location. Although we are based in Farmington, Connecticut, we do this work nationwide.
In addition, we write, update, publish and sell Know Your Rights: A Handbook for Patients with Chroinc Illness, which is a book written for patients that teaches them how to be their own advocates.
Finally, we participate in public policy discussions to the extent that our staffing allows.
If you have a question or problem related to a chronic illness and need legal information, advice or assistance, please feel free to email us at patient_advocate@sbcglobal.net or call (860) 674-1370.
Jennifer C. Jaff, Esq.

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