who runs it
Organizations running this strategy · 5
what it looks like in practice
Activities of orgs running this strategy
A sample of programmatic activities from the orgs above — what the strategy looks like on the ground.
- Hosting educational webinars and virtual events CARCINOID CANCER FOUNDATIONdirect serviceOrganizes monthly virtual webinars and other educational events to engage and inform neuroendocrine cancer patients about current topics in care and research.
- Providing educational resources for neuroendocrine cancer patients and caregivers CARCINOID CANCER FOUNDATIONdirect serviceOffers comprehensive information on diagnosis, treatment options, and research for patients and caregivers, including over 550 educational videos and the NET VITALS guide for newly diagnosed individuals.
- Supporting research on carcinoid and neuroendocrine tumors CARCINOID CANCER FOUNDATIONresearchEncourages and funds research initiatives focused on carcinoid and neuroendocrine tumors, advancing scientific understanding and treatment development.
- Hosting discussion forums THE VIRTUAL CENTER FOR VELO-CARDIO- FACIAL SYNDROME INCdirect serviceHosts a forum for discussion on problems, treatments, and recent advancements related to velo-cardio-facial syndrome, craniofacial disorders, genetic syndromes, and their management.
- Providing free consultation and information services THE VIRTUAL CENTER FOR VELO-CARDIO- FACIAL SYNDROME INCdirect serviceOffers free consultation and information to families and clinicians about velo-cardio-facial syndrome, craniofacial disorders, and genetic syndromes, including updates on research and treatment outcomes.
- Organizing patient and professional educational conferences and communications The Oxalosis & Hyperoxaluria Foundationdirect servicePlans and conducts educational conferences for patients and healthcare professionals, distributes newsletters and mailings, and organizes medical advisory board conferences to support knowledge sharing in the oxalosis and hyperoxaluria community.
- Conducting education and awareness activities for patients, healthcare professionals, and the public VEXAS Foundation Incdirect serviceProvides education and awareness about VEXAS syndrome to patients, families, healthcare professionals, and the general public through resource materials and direct information sharing. Created the VEXAS Syndrome Resource Guide in 2025 to support understanding of the condition and available treatments.
- Funding research on VEXAS syndrome through scientific grants VEXAS Foundation IncgrantmakingAwards grants to support groundbreaking research on VEXAS syndrome, including studies aimed at understanding genetic mechanisms, developing novel treatments, and improving patient outcomes. Specifically funds research at the David Beck Lab at NYU Grossman School of Medicine.
- Supporting and disseminating VEXAS syndrome research VEXAS Foundation IncresearchConducts, supports, and shares scientific research on VEXAS syndrome, including publishing patient-reported data from the VEXAS Patient Experience Survey and providing access to updates on research advances and treatment options.
- Advocates for patient perspectives in regulatory review processes GALACTOSEMIA FOUNDATIONadvocacyEngages in advocacy to ensure patient voices are included in regulatory evaluations, such as the FDA's review of govorestat (AT-007), a potential first treatment for galactosemia.
- Disseminates disease-specific medical information to patients and families GALACTOSEMIA FOUNDATIONdirect serviceProvides comprehensive information about galactosemia, including associated complications such as cataracts, speech disorders (e.g., apraxia), and primary ovarian insufficiency, to help families manage health outcomes and coordinate care.
- Funds medical and scientific research on galactosemia GALACTOSEMIA FOUNDATIONgrantmakingProvides research grants to medical professionals and research institutions to support studies on galactosemia, including topics such as nutrition, diet, therapy, neurological deficits, and premature ovarian failure.
- Organizes biennial conferences for the galactosemia community GALACTOSEMIA FOUNDATIONdirect serviceHosts a biennial conference for individuals affected by galactosemia, medical professionals, and researchers to provide education, support, and advocacy. The next conference is scheduled for July 16–18, 2026.
- Provides educational resources and support for newly diagnosed families GALACTOSEMIA FOUNDATIONdirect serviceOffers an informational toolkit and outreach program for families newly diagnosed with galactosemia, providing tools, resources, and connections to clinicians and researchers to support early education and care planning.
- Publishes the Galactosemia Gazette newsletter GALACTOSEMIA FOUNDATIONdirect serviceProduces and publishes the Galactosemia Gazette, an online newsletter released twice annually, to share updates, research, and community news with the galactosemia community.
- Supports individual fundraising initiatives for galactosemia GALACTOSEMIA FOUNDATIONcapacity buildingProvides capacity-building support and promotional resources to individuals and groups organizing fundraisers for galactosemia-related causes, helping to amplify community-driven funding efforts.