Publications and Books


Dr. Lorna Speid, President of PRDPF! spoke at the American ASCPT Meeting in 2016. Her presentation was 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.


Dr. Speid recommends the book, Clinical Trials: What Patients and Healthy Volunteers Need to Know, if you are considering entering clinical trials. It will provide you with the questions you need to ask the Investigators before, during and after you exit the clinical trial, and much more.

Diagnosis: Rare Disease

“Rare Disease” the diagnosis that no parent ever wants to hear. “This book gives a heartbreaking exposé of what life is like for families that have a member with a rare disease,” explains Carolyn Paisley-Dew, ISMRD Board Member.

Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued By Genetic Disease

Taylor Kane was a daddy’s girl from the moment she was born, smiling and cooing whenever her father was around and refusing to sleep until he held her in his arms. But shortly after she turned three years old, the unthinkable happened. Her father was diagnosed with a rare, genetic disease for which there was no cure. It wasn’t long before he began to experience a number of bizarre and frightening symptoms, and young Taylor watched helplessly as the disease ravaged his body and mind, transforming him into a shell of the father she once knew

When Gail Campbell Woolley was seven, a pediatrician told her mother that Gail suffered from sickle cell anemia, a rare blood disease, and that she would be dead by age 35. While others may have responded to this horrifying news by descending into a fog of self-pity, Gail went in the opposite direction. Read her life story.

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.