PNH Foundation

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.

Here's a photo of Shauna in the "before" times.She moved from Alaska in order to see a specialist in North Carolina. Ye...
09/02/2026

Here's a photo of Shauna in the "before" times.
She moved from Alaska in order to see a specialist in North Carolina.
Years later, she spoke at the recent Chapel Hill AAMDSIF Patient and Family Conference, a long-term survivor of MDS.
During Blood Cancer Awareness Week, listen to Shauna tell her own story here: https://www.aamds.org/share/webinar/801
(PS: Don't be surprised when she tells you how she won the pageant!)

Come and learn the latest about Aplastic Anemia, MDS, and PNH!Find out more about these bone marrow failure conditions a...
08/31/2026

Come and learn the latest about Aplastic Anemia, MDS, and PNH!
Find out more about these bone marrow failure conditions and the latest in Treatment and Research.
Connect with others who are going through the same experience as you.
You're invited to the 2026 AAMDSIF Columbus Patient and Family Conference on October 24!
These connections last. Find out more and register: https://www.aamds.org/conference-events/2026-columbus-patient-and-family-conference



OSUCCC-James Cancer Hospital and Solove Research Institute
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OhioHealth
Nationwide kids

"This life-changing experience has profoundly affected my understanding of human connection and the true essence of comp...
08/30/2026

"This life-changing experience has profoundly affected my understanding of human connection and the true essence of compassion. The selfless act of a stranger giving a part of themselves to save my life made me realize that there is no us or them..."

Sahar's story holds great losses but also great hope. Severe Aplastic Anemia came, but she didn't give up! This mom and professional endured and now pursues her dreams---read here: https://www.aamds.org/patient-chronicles/sahar-masoom

“Maintaining what helps your mental health is as important as transfusions,” Christy advises as she waits for a bone mar...
08/29/2026

“Maintaining what helps your mental health is as important as transfusions,” Christy advises as she waits for a bone marrow transplant.

Christy was diagnosed only recently with Severe Aplastic Anemia. Her husband's concern pushed her to bloodwork, then bone marrow biopsy, then diagnosis.

How are Christy's children handling the change in their mom, and the changes to come? Which symptom prompted the concern? Learn everything in Part 1 of Christy's story as she shares her journey: https://www.aamds.org/patient-chronicles/christy-lazarus

➡️UPDATE: Christy has checked in for her transplant! Stay tuned, and wish her well!!!

08/28/2026

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.

AAMDSIF Support Groups are VIRTUAL, so you can join from anywhere!Whether you have Aplastic Anemia, MDS, or PNH, or any ...
08/27/2026

AAMDSIF Support Groups are VIRTUAL, so you can join from anywhere!
Whether you have Aplastic Anemia, MDS, or PNH, or any combination of these conditions, you can find others with the same condition as you!
Never joined? You'll be welcomed!
Find the group that suits you best here: https://www.aamds.org/support/patient-family-virtual-support-groups
Need help deciding? Email [email protected] for more information.

08/26/2026

Transplantation has come a long way since its beginning and the science continues to advance today.
Are you facing a bone marrow transplant or a stem cell transplant? What do you know about GVHD, Graft VS Host Disease, and its treatment?
Find out up-to-date information from Dr. Corey Cutler in this recent recording: https://www.aamds.org/share/webinar/789

Dr. Sumithira Vasu discusses the diagnosis, treatment, and impact of transplant-associated thrombotic microangiopathy (T...
08/24/2026

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


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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