Publications and Books



Dr. Lorna Speid, President of PRDPF! spoke at the American ASCPT Meeting in 2016. Her presentation has been published in the ASCPT’s peer reviewed journal. You can find the reference below.  In the publication, Dr. Speid provides a summary of the challenges faced by patients with rare diseases.

Speid, L. (2016), Don’t Do Different Things – Do Things Differently! Drug Development in Rare Diseases: The Patient’s Perspective. Clin. Pharmacol. Ther., 100: 336–338. doi:10.1002/cpt.403.”


Book Series About Sickle Cell

My Friend Jen Book Series.
Welcome to our award-winning children’s picture books that educate readers about sickle cell.

Click HERE to buy books from the series about sickle cell.

The main aim of our children’s books on sickle cell is to promote sickle cell awareness and to give young children with sickle cell peace of mind and confidence to not feel limited by their condition.