Kristin Smedley, founder of Curing Retinal Blindness Foundation (CRBF) discusses how she used social media and other tools to build her patient advocacy organization and her brand. CRBF is recognized as a leader in the blindness advocacy field, largely due to the relentless pursuit of its founder getting herself out to the community.

“I have gone to every conference I can possibly go to between the rare disease community and the ophthalmology community,” noted Smedley, adding that those years have greatly paid off with people at conferences now coming to her to share their experiences.

Smedley recommends that newer non-profit organization do the same – use the tools available (social media, attend conferences, public speaking, etc) to raise awareness of your cause.

CRFB is focused on finding treatments and cures for CRB1 retinal disease. Mutation in the CRB1 gene can lead to two rare conditions – retinitis pigmentosa and Leber congenital amaurosis.

Retinitis pigmentosa is the result of the photoreceptor cells of the eye deteriorating. It is a slow degenerative disease and will eventually lead to total blindness when the person reaches their teens or early adulthood.

Leber congenital amaurosis is a more aggressive disease that often appears at birth or soon after birth. Symptoms and severity can vary greatly among patients, but the gene mutations will cause loss of the photoreceptor cells and will lead to blindness.

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