My Nonprofit Reviews

I have had the chance to meet and work with many advocacy organizations for various rare diseases. STXBP1 Foundation stands as an example to others. They've done so much right and so quickly. Other org would do well to follow their model.

SRF is setting the standard for how patient communities can advance the research and awareness for their condition and help help treatments. Their commitment to transparency allows their example to literally be your playbook if you are also tackling the challenges of rare disease disabilities or epilepsy.