Working Together to Make an Impact on Patient Care – Friedreich’s Ataxia
At Cydan, we are dedicated to accelerating impactful therapies for people with rare genetic diseases, but first and foremost we’re dedicated to helping improve the…
Only through education, community and action will we begin to defeat sickle cell disease…
This is a unique time for patients and families living with sickle cell disease. In the history of this disease, first identified little more than…
I sat in recently on a panel discussion at the Foundation for Sickle Cell Disease Research meeting focused on a patient bill of rights. Among…
The “Intimacy” of Working in Rare Diseases
In one of my earliest interactions with a rare disease group, the mother of a child suffering from a rare skin disorder described an incident…
Responsibilities in Communicating Science to Patients and Parents
As scientists, we are trained to describe our work with a factual clarity that may seem dry and opaque. However, in the summaries and abstracts,…