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.

06/07/2026

What is GVHD, or Graft VS Host Disease, and how might it develop in transplant patients?
Learn all about transplants, risk, and reward for bone marrow failure disease patients in this recent recording with Dr. Jeremy Meier: https://www.aamds.org/share/webinar/799

Here's a photo of Shauna in the "before" times.She moved from Alaska in order to see a specialist in North Carolina. Ye...
06/06/2026

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.
Watch and listen to Shauna tell her story here: https://www.aamds.org/share/webinar/801
(PS: Don't be surprised when she tells you how she won the pageant!)

Did you miss these updates?In this webinar, Dr. Taha Bat discusses research most relevant to patients reported over the ...
06/05/2026

Did you miss these updates?
In this webinar, Dr. Taha Bat discusses research most relevant to patients reported over the past year on the biology and treatment for Aplastic Anemia (including SAA and VSAA) and PNH (Paroxysmal Nocturnal Hemoglobinuria.) Find out more and watch the recording here:
https://www.aamds.org/share/webinar/2626

Neither ATG treatment provided long-term results for Jen.The stem cell transplant had to occur at the hospital -- 2 hour...
06/04/2026

Neither ATG treatment provided long-term results for Jen.
The stem cell transplant had to occur at the hospital -- 2 hours from her home and children.

"Keep the faith! It is a journey with lots of ups and downs but a great gift at the end," she says.
Read how she maintained hope here: https://www.aamds.org/patient-chronicles/jen-heintskill

Why do you feel "extra" tired during treatment, and even after?In this recording, Dr. Furha Cossor discusses living with...
06/02/2026

Why do you feel "extra" tired during treatment, and even after?
In this recording, Dr. Furha Cossor discusses living with bone marrow failure and fatigue management. Recording includes the question-and-answer session.
Watch now: https://www.aamds.org/share/webinar/765

Register today for Virtual Support Groups! 🩸Find others with your disease, to chat, encourage, or be encouraged! All aff...
05/31/2026

Register today for Virtual Support Groups! 🩸
Find others with your disease, to chat, encourage, or be encouraged!

All affected by Aplastic Anemia, MDS, or PNH are welcome to attend these disease-focused groups. There's a special group for parents of pediatric patients as well.
Register/find more information: https://www.aamds.org/support/patient-family-support-groups

We're cheering for you!

What is High Risk, or Higher Risk, MDS?Myelodsyplastic Syndromes have a variety of risks, depending on the genetic mutat...
05/30/2026

What is High Risk, or Higher Risk, MDS?
Myelodsyplastic Syndromes have a variety of risks, depending on the genetic mutation and the IPSS-M Score.
Listen to Dr. J. Gonzalez Lugo explain the what High Risk MDS means for patients in this recording: https://www.aamds.org/share/webinar/771

You can learn about Aplastic Anemia, MDS/AML/MPN, and PNH at this conference on June 13 in Seattle, WA. Don't miss out ...
05/29/2026

You can learn about Aplastic Anemia, MDS/AML/MPN, and PNH at this conference on June 13 in Seattle, WA. Don't miss out on your chance to learn from the experts! Patients, families, and friends are welcome!

-Learn current thinking on disease and treatments
-Hear about what's on the horizon for treatments
-Gain practical information on how to improve your health and well-being
-Get answers to your questions from top medical experts
-Connect with other patients and families
Register now: https://www.aamds.org/conference-events/2026-seattle-patient-and-family-conference

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

Website

Alerts

Be the first to know and let us send you an email when PNH Foundation posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Category