Learn more about CureGRIN, founded in 2018 by parents of children diagnosed with GRIN Disorder to help find cures and therapies for people around the world suffering from these conditions.

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.

The 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.

Spotlight on Trial Equity, an organization whose mission is to address the underrepresentation of diverse populations in clinical trials, ultimately advancing health equity.

SRNA 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.

AVM 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.

After 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.

ANGEL 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.

The Cure Mito Foundation is a volunteer-run foundation dedicated to advancing education and research for Leigh syndrome and mitochondrial disease.

For 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.

When 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.

When 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.

The 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.

The 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.

The 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.

The 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.

Rare 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.

The 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.

Learn more about the National Society of Genetic Counselors (NSGC), an association which promotes the professional interests of genetic counselors and offers a network for professional communications. Access the full article to read about their mission, vision, and history.

The Center for the treatment of Pediatric Neurodegenerative Disease strives to centralize care for children afflicted with these rare, chronic, and debilitating diseases. The Center includes a multidisciplinary team of physicians and other healthcare providers offering comprehensive services to aid in the diagnosis, management, and social support of children and their families suffering from neurodegenerative diseases.

The National Alliance for Caregiving is an organization that’s dedicated to improving the quality of life for both caregivers and those in their care. With an emphasis on friend and family caregivers, the NAC aims to advance research, advocacy and innovation in all areas of caregiving.

The Myasthenia Gravis Rare Disease Network (MGNet) is a consortium of academic medical centers partnering with the Myasthenia Gravis Foundation of America and Conquer MG as well as collaborators in other research groups and industry. We are working together to enhance therapeutic development for this rare disease.