PNH Foundation

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PNH Foundation AAMDSIF supports, connects and educates patients, caregivers and health professionals on bone marrow

The PNH Research and Support Foundation has merged with the Aplastic Anemia and MDS International Foundation. We support, connect and educate patients, caregivers and health professionals on bone marrow failure diseases worldwide. We also promote and invest in collaborative clinical research to accelerate the discovery of better treatments and cures for aplastic anemia, MDS, PNH and related bone marrow failure diseases.

10/17/2026

"Surviving does not necessarily mean returning to the person you were before."
Stefania discovered that her journey didn't end with transplant: she still has chronic GVHD and lingering consequences from some of the medications. Yet Stefania encourages all patients to persevere! Learn about her experience by reading her story: https://www.aamds.org/patient-chronicles/stefania-erazo-0

Transplant patients: what do you know about TA-TMA?Dr. Sumithira Vasu discusses the diagnosis, treatment, and impact of ...
10/15/2026

Transplant patients: what do you know about TA-TMA?
Dr. Sumithira Vasu discusses the diagnosis, treatment, and impact of transplant-associated thrombotic microangiopathy (TA-TMA).
Find out what you want to know about this condition here: https://www.aamds.org/share/webinar/2806


What can you do to advance PNH research? Join the AAMDSIF Global PNH Patient Registry! Since PNH is so rare, every pat...
10/14/2026

What can you do to advance PNH research?
Join the AAMDSIF Global PNH Patient Registry! Since PNH is so rare, every patient experience is a unique and invaluable part of the natural history of PNH. Sharing your information in the Registry allows for:
· Understanding how PNH impacts your quality of life
· Improving PNH treatment
· Contributing to PNH research
· Having YOUR voice be heard!

Learn more about the AAMDSIF Global PNH Patient Registry and how to enroll: https://www.aamds.org/sponsored-research/global-pnh-patient-registry

10/13/2026

When you're in treatment, sometimes figuring out which foods can help you the most can be challenging.
Sondos Khattab, Registered Dietitian, explains how you can manage getting the best nutrition in this recent recording. https://www.aamds.org/share/webinar/2895
Both patients and families are welcome to watch this recording -- and bookmark it for later.

“She’s in critical condition, take her to the Emergency.” This is how Phoenix began her journey with Severe Aplastic An...
10/11/2026

“She’s in critical condition, take her to the Emergency.”
This is how Phoenix began her journey with Severe Aplastic Anemia. What would follow was a challenge for both herself and her mom.

She and her mom, Laura, explain how she was treated with a transplant.
Then follow her return to school! Read their story here: https://ow.ly/IEAJ50X8xfN

Many thanks to Novartis Gold Sponsor of the Metro DC March for Marrow!
10/10/2026

Many thanks to Novartis Gold Sponsor of the Metro DC March for Marrow!

Many thanks to Biogen Gold Sponsor of the Metro DC March for Marrow!
10/10/2026

Many thanks to Biogen Gold Sponsor of the Metro DC March for Marrow!

Many thanks to Alexion Pharmaceuticals Gold Sponsor of the Metro DC March for Marrow!
10/10/2026

Many thanks to Alexion Pharmaceuticals Gold Sponsor of the Metro DC March for Marrow!

Address

401 N Washington Street, Ste 430
Bethesda, MD
20850

Opening Hours

Monday 8:30am - 4pm
Tuesday 8:30am - 4pm
Wednesday 8:30am - 4pm
Thursday 8:30am - 4pm
Friday 8:30am - 4pm

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