Rare Together
LDA Research consultant, Andrew Grant, highlights the shared common experiences of rare disease patients discussed in our Rare Together podcasts
LDA Research consultant, Andrew Grant, highlights the shared common experiences of rare disease patients discussed in our Rare Together podcasts
Today, Dr. David Fajgenbaum celebrates being in remission for ten and a half years from the rare Castleman disease. LDA Research’s director Lucy Doorbar talks to him about how he discovered a treatment for his disease, and the importance for pharmaceutical companies to understand the patient experience.
When Taylor Coffman went to give birth, she knew there would be risks and challenges, but she didn’t expect to trigger a rare disease that almost killed her multiple times. Luckily she survived to be a mother and advocate for all patients.
Following our Rare Together podcast with Taylor Coffman about living with the aggressive rare disease atypical Hemolytic Uremic Syndrome or Complement-Mediated Pregnancy-Induced Thrombotic Microangiopathy, we asked her how to make rare disease voices heard on a larger and more lasting scale.