We have become involved with this organization and encourage you to do the same.  Here’s an excerpt from their website to explain what it is they can offer groups like ours who are encountering rare disease.

“Timing is critical for rare diseases. The time patients wait for a diagnosis. The time a clinician spends searching for answers. The time it takes to develop new treatments. What if we could speed that up? We could save lives. We could improve the quality of life for hundreds of millions of people. Every patient has their own story: their own journey, their own symptoms, their own genes, their own face and voice.
Technology now exists to learn from those stories to help recognize these syndromes and find answers faster. We are devoted to using this technology to find answers for you. Every time a patient’s photo and information are analyzed by Face2Gene, our flagship product for clinicians, labs and researchers, the de-identified information “teaches” our system to recognize new syndromes, facial characteristics and genes.”

Contact Trish or Andrea at admin@hnrnph2.org to learn how your daughter’s photographs from through the years can help our group of families to grow even more.