The National Neutropenia Network and the Barth Syndrome Foundation will be hosting a neutropenia educational series for the next four months. We invite you to join us as we learn about neutropenia from experts who will focus on the specific concerns patients and parents have expressed about living with or raising a child who suffers with this...

We at BSF express our heartfelt gratitude to Bryan D, Steven G and Walker B for recently meeting with legislators in their home States. All three volunteer ambassadors participated in a national campaign for better U.S. Food and Drug Administration (FDA) review processes for ultra-rare indications, like Barth syndrome.  

Efforts by Bryan, Steve, and Walker were focused on greater transparency and...