Resources & Websites for Patients and Caregivers


Resources & Websites for Patients and Caregivers

nord - national organization for rare disorders

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 NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 280 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.  Website

aaida - advocacy & awareness for immune disorders association

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 AAIDA exists to advocate for patients living with Primary Immunodeficiency (PI), Secondary Immunodeficiency and Autoimmune Diseases, to create awareness and conduct research to find cures for these different groups of diseases.   AAIDA’s purpose is to educate patients and providers alike, to advocate for patients living with immune disorders, create awareness about immune disorders and to make strides in research to find cures and novel treatment options for these diseases. Website 

aarda - american autoimmune diseases association, inc.

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 The American Autoimmune Related Diseases Association is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner. Website

wego health

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WEGO Health is a mission-driven company connecting healthcare with the experience, skills and insights of Patient Leaders. We are the world’s largest network of over 100k Patient Leaders, working across virtually all health conditions and topics. Our network collaborates with pharmaceutical and life sciences companies, agencies, consultancies, startups and all types of organizations across healthcare. Website 

global genes - allies in rare disease

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 Global Genes’ story began with our loved ones. We are the friends, family and supporters of patients close to us who are affected by rare disease. We understand the confusion, the overwhelming experience of the unknown and the feelings of isolation all too well. And we know we aren’t alone. That’s the reason Global Genes was born – to connect, empower and inspire the rare disease community. Website

IDA - Invisible DISABILITIES association

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 The Invisible Disabilities® Association is about believing. We believe you! The frequently invisible nature of illness and pain may lead to disbelief about that illness or pain by those surrounding the person who lives daily with invisible disabilities.Our mission is to encourage, educate and connect people and organizations touched by illness, pain and disability around the globe. Envision with us, a world where people living with illness, pain and disability will be Invisible No More®. Website


Resources for patients and caregivers

Dysautonomia International

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Dysautonomia International is a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness and patient empowerment programs. Website

The Caregiver Action Network

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The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

NAC - National Alliance for Caregiving

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Established in 1996, the National Alliance for Caregiving (NAC) is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. NAC conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues.

As a coalition, NAC recognizes that family caregivers provide important societal and financial contributions toward maintaining the well-being of those in their care. In addition to national research and advocacy, NAC provides technical assistance to a national network of caregiving coalitions representing nearly 30 states and localities in the United States and serves as Founder and Secretariat for the International Alliance of Carer Organizations (IACO). Website