The International Waldenstrom's Macroglobulinemia Foundation (IWMF) is a patient-founded and patient-driven, international nonprofit organization with a simple but compelling vision and mission: to have a world without WM (Waldenstrom's macroglobulinemia) and to support and educate everyone affected by Waldenstrom's macroglobulinemia (WM) while advancing the search for a cure.
Read MoreThe MOG Project is devoted to raising awareness about MOG Antibody Disease (MOGAD), as well as educating doctors, patients, and caregivers and also advancing research through expert collaboration and fundraising for our Research for Rare program.
Read MoreSpotlight on Trial Equity, an organization whose mission is to address the underrepresentation of diverse populations in clinical trials, ultimately advancing health equity.
Read MoreSRNA is a not-for-profit, international organization dedicated to the support of children, adolescents, and adults with a spectrum of rare neuroimmune disorders. Learn more about their work, community, and resources.
Cure CMD is a non-profit organization whose mission is to advance research toward treatments for congenital muscular dystrophies (CMD) and improve the lives of those living with CMD through the engagement and support of their community.
Read MoreAVM Alliance is a 501(c)(3) charity dedicated to filling the needs of the pediatric Brain AVM & Stroke community, helping parents of children who have been affected by brain vessel disease and Stroke.
Read MoreAfter their son’s diagnosis of Epilepsy, the Anderson’s struggled to find a sleep-monitoring solution that worked for them. They decided to take matters into their own hands and created SAMi, a device designed to track nocturnal seizures as well as many other nighttime symptoms. Now, the family continues to develop SAMi, and unlock potential in the device that they are uncovering as they go.
Read MoreThe National Human Genome Research Institute (NHGRI) is a leader in the celebration of National DNA Day. Learn more about their mission and purpose.
Read MoreANGEL AID supports rare families and offers relief services to caregivers through sustainable health and wellness training, transformative retreats, and a globally connective mother-to-mother network.
Read MoreThe Cure Mito Foundation is a volunteer-run foundation dedicated to advancing education and research for Leigh syndrome and mitochondrial disease.
Read MoreFor over 25 years, the United Mitochondrial Disease Foundation (UMDF) has worked to promote research and education for the diagnosis, treatment and cure of mitochondrial disorder while supporting affected individuals and families.
For parents and other family members of children with disabilities, nothing is more comforting than the voice and wisdom of someone who’s been there—someone who truly understands the ups and downs of living alongside someone with a rare disease or rare disorder. That’s why Theresa Bartolotta decided to offer a podcast.
Read MoreWhen it comes to finding answers about rare disease, nothing is more powerful than a parent’s determination and perseverance. That’s exactly how the Familial Dysautonomia (FD) Foundation came to be in 1951.
Read MoreWhen Paul Poth received a rare cancer diagnosis at age 37, it kicked off a series of events that would change the course of treatment for countless other patients. Read on to learn why Paul started TargetCancer Foundation and what is the organization’s main mission.
Read MoreThe Propionic Acidemia Foundation is a 501(c)3 non-profit organization dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals.
Read MoreThe Organic Acidemia Association is a non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders. Learn more about their patient registry, a new Metabolic balancer app, and their newborn screening resources.
Read MoreThe Genesis Foundation for Children is a non-profit organization that provides wraparound care for children born with rare diseases and genetic disorders. Learn more about their impact and the programs that they fund.
Read MoreThe PMG Awareness Organization is a nonprofit organization of families, caregivers, and medical professionals that support those with Polymicrogyria and raise awareness of this rare disease. Learn more about their goals and upcoming events.
Read MoreRare Patient Voice is a market research company that connects patients and caregivers with opportunities to share their opinions with researchers and companies developing medical products, treatments, and services.
Read MoreThe Alagille Syndrome Alliance is an international nonprofit that strives to create a loving and supportive community for all ALGS Warriors. Learn more about their mission and the several goals that they aspire to achieve.
Read More
