Written by Valaree DonFrancesco on October 13, 2021
On the show today, Aprill Lane is a mother of five and rare disease and infertility advocate — and you do not want to mess with her. She and her husband, Brian, tried to have a baby on their own for 4½ years until they were diagnosed with unexplained infertility. Endless… Read More
Written by Valaree DonFrancesco on September 29, 2021
In celebration and recognition of Rare Cancer Day, I had the pleasure of speaking with Dan “Dry Dock” Shockley. Dan is a retired Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and hereditary colon cancer warrior. After his initial colonoscopy, he… Read More
Written by Maia Craig on September 28, 2021
David Arons is the Chief Executive Officer of the National Brain Tumor Society (NBTS). He shares a passion for incorporating diversity, equity, and inclusion within the rare cancer and rare disease space.
1. How did you get started in the rare disease community?
I was motivated by my father… Read More
Written by Rohan Narayanan on September 22, 2021
Research study is open to participants worldwide to advance understanding and treatments for TBRS, a mutation of DNMT3A, causing overgrowth, autism, intellectual disabilities, orthopedic concerns, cardiac issues, and a variety of other health and developmental concerns.
Stanfordville, New York, September 21 — Tatton Brown Rahman Syndrome Community and the National Organization… Read More
Written by Valaree DonFrancesco on September 15, 2021
Kicking off Season 3 of NORDpod, I am joined by Karina Sturm, a disabled journalist, blogger, author, and filmmaker who tries to connect with chronically ill people around the world and spread the word about Read More