SDS PFDD Meeting (Externally-Led Patient Focused Drug Development Meeting for Shwachman-Diamond Syndrome)

The SDS PFDD meeting is a very special and unique opportunity for patients and families to come together and share our voices and stories with the purpose of accelerating research and improving care. The meeting is part of our "100 Voices to #CureSDS" campaign and is bound to be the biggest and most impactful gathering of SDS patients and their families, along with the FDA, researchers, and industry. Don't miss it!

The meeting is an Externally-led Patient-Focused Drug Development meeting, which is a special type of meeting developed by the FDA to give FDA and other key stakeholders, including medical product developers (pharma/biotech companies), health care providers (doctors), researchers, and the general public, a unique and important

opportunity to hear directly from patients and their families/caregivers, and patient advocates about:

• the symptoms that matter most to them,

• the impact the disease has on patients’ daily lives, and

• patients’ experiences with currently available treatments.