Written by Rohan Narayanan on October 5, 2021
I have been diagnosed with a rare chronic genetic disease called partial trisomy 8Q duplication syndrome since birth and I was also recently diagnosed with hidradenitis suppurativa (HS). My life has been full of challenges, and I want to bring awareness to what I go through so that anyone… Read More
Written by Lisa Sencen on July 25, 2017
Washington, D.C., July 25, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL). This new resource is available free online to individuals around the world.
As the primary… Read More
Written by Lisa Sencen on December 22, 2016
Today we are sharing the story of one little girl… Read More