Resources & Websites for Patients and Caregivers

 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 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 

 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 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’ 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

 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

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 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.

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

Mesothelioma is a rare cancer caused by asbestos exposure that effects the lining of the lungs. Mesothelioma.net provides patients and their families with comprehensive information on treatments, complimentary therapies and research. Mesothelioma.net also provides resources for finding the best doctors and financial assistance. Website 

Mesothelioma Hope provides detailed information to help those affected by mesothelioma find peace. The site strives to give the most accurate and helpful directions for addressing mesothelioma symptoms, treatments, and resources. Mesothelioma Hope is dedicated to getting patients and their families the help they need. 

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. We do not speak for patients. We provide the training, education, resources and opportunities to make their voices heard. By activating the patient advocate, we can change public policy and save lives. Website