Organisation im Fokus: CureGRIN
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.
Organisation im Fokus: Bliss Health
It’s no secret that it is difficult to get to a pain medicine specialist. There are just so many people in pain who cannot find relief, and are looking for help. Learn about Bliss Health, which provides access to pain management services through virtual consultations, through a dedicated team of medical professionals who specialize in the diagnosis, treatment, and ongoing management of various types of chronic and acute pain conditions.
Organisation im Fokus: Die Internationale Waldenström-Makroglobulinämie-Stiftung (IWMF)
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.
Organisation im Fokus: Das MOG-Projekt
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.
Organisation im Fokus: Trial Equity
Spotlight on Trial Equity, an organization whose mission is to address the underrepresentation of diverse populations in clinical trials, ultimately advancing health equity.
Organisation im Fokus: Siegel Rare Neuroimmune Association (SRNA)
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.
Organisation im Fokus: Cure CMD
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.
Organisation im Fokus: Die AVM Alliance
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.
Organisation im Fokus: SAMi
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.