Written by Laura Mullen on July 9, 2018
The Joshua Frase Foundation (JFF) is a non-profit organization founded with a simple yet seemingly unattainable vision: to find a cure for Myotubular Myopathy (MTM). The journey towards a cure started the day Joshua Frase was born with a disease so rare that he was said to be… Read More
Written by Lisa Phelps on October 26, 2017
View the full documentary.
Danbury, C.T., October 26, 2017 – Imagine never being allowed to feel the sun on your skin. For 11-year-old Peyton, who is allergic to sunlight, that is a reality. In a new documentary released today, see how the National Organization for Rare Disorders… Read More
Written by Christina Jensen on February 16, 2015
In celebration of Rare Disease Day, NORD is excited to host a special event for the rare disease community that includes a screening of the new documentary, “Banner on the Moon,” about Cindy Abbott and narrated by Valerie Harper.
Join us in D.C. for a reception and to see this inspiring… Read More