Written by Valaree DonFrancesco on February 22, 2021
Tristan Lee, a 37-year-old Pennsylvania man who has lived with sickle cell disease since birth, is a patient advocate with Sickle Cell Disease Association of America, a NORD member organization. Today, Tristan shares his personal story for Rare Disease Day with WebMD, with information about NORD noted at the end… Read More
Written by Valaree DonFrancesco on June 19, 2020
At the head of the herd is… Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America
Beverley advocates for those living with… sickle cell disease.
How Beverley got here…
I started working at SCDAA in 2018 because of my personal connection to sickle cell disease. I have a… Read More
Written by Valaree DonFrancesco on February 4, 2020
My daughter Gia was diagnosed at birth with the rare disease sickle cell. Gia has had 5 bouts with pneumonia, many stays in ICU, and nine blood transfusions. Sickle cell disease (SCD) is a genetic blood disorder that causes normal… Read More
Written by Valaree DonFrancesco on November 12, 2019
I attended the NORD 2019 Summit in Washington, DC a few weeks ago. It was my first chance to attend this conference organized by the National Organization for Rare Disorders and, admittedly, the first time I considered going. I had the impression that NORD was a policy and advocacy… Read More
Written by Valaree DonFrancesco on June 20, 2018
*The following article ran 6/19/2018 via Pennsylvania Legislative Services, an online legislative research, tracking, media, and analysis service providing access to Pennsylvania’s policy making process.
SUPPORTERS, LAWMAKERS CELEBRATE RARE DISEASE AWARENESS DAY
By Derek Snyder, Pennsylvania Legislative Services | June 19, 2018
Dozens of advocates joined… Read More