Where Can PNH Patients Find Support?

On this episode of This is PNH, hosts Keith and Amy explore the importance of finding support through community, connection, and trusted resources.

Michael shares how a delayed diagnosis led him to an online community that changed his life. Nearly 20 years later, he helps lead one of the largest private Facebook groups for people affected by PNH, where patients and caregivers share real experiences, practical advice, and support that only comes from people who truly understand.

Leigh Clark of the Aplastic Anemia and MDS International Foundation discusses how patient organizations provide education, advocacy, and reliable resources while helping people navigate common challenges like fatigue, brain fog, anxiety, and the uncertainty that can come with living with a rare disease.

Whether you're living with PNH, caring for someone who is, or simply looking for connection, this conversation highlights the power of finding your community.

For more information, visit thisispnh.com

Transparency Statement: The This is PNH Podcast is produced by Believe Limited and made possible by Biogen.

The following Biogen-supported program is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any medical decisions.

Biogen, is not affiliated with nor endorses any particular organization, and is not responsible for the content of any sites or resources we may link to from this website, and makes no guarantees about the accuracy of the information or the quality of support provided.