Aplastic Anemia and MDS International Foundation

04/30/2026

"I survived on blood transfusions and panicked hope, along with a wretched determination to live as normal a life as possible, despite being at continuous high risk of spontaneous and fatal bleeding without platelets that could adequately clot blood."

Then, "Several years in, a bone marrow biopsy showed my condition had evolved from aplastic anemia into the highest-risk form of myelodysplastic syndrome (MDS); the stark truth was that I now had a three- to six-month life expectancy."

From shock to despair to joy, find Dianne's story here: https://www.aamds.org/patient-chronicles/dianne-witter

04/29/2026

You are welcome at the Tampa Patient and Family Conference, for patients with bone marrow failure diseases and their families/care partners!
➡️Aplastic Anemia, PNH, MDS, AML, MPNs will all be featured, from diagnosis through treatment to survivorship. Ask your hardest questions of the experts presenting on May 16.

-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-tampa-patient-and-family-conference

04/28/2026

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!

Virtual and Local patient-focused groups play an important role in the lives of bone marrow failure bone marrow failure: A condition that occurs when the bone marrow stops making enough healthy blood cells.

04/27/2026

Do patients with Aplastic Anemia, MDS, or PNH experience severe fatigue?

"Now there is fatigue that is related to therapy that comes with the diagnosis for bone marrow failures, and 80 to 100% of people living with bone marrow failures, experience this type of fatigue, and it's one of the most common side effects of treatment for those who are receiving treatment for their diagnosis," says Christina Cline, RN.

She explains how to manage this fatigue that interferes with daily life in this podcast episode: https://www.aamds.org/podcast/dealing-fatigue-christina-cline-rn

04/26/2026

Thanks to Apellis for their Bronze Sponsorship of AAMDSIF March for Marrow California!
Apellis Pharmaceuticals

04/26/2026

Special thanks to Novartis for being a Gold Level Sponsor of March for Marrow California!
Novartis

04/26/2026

Special Thanks to Alexion for their Gold Level Sponsorship of March for Marrow California!
Alexion Pharmaceuticals

04/25/2026

"When we set out for our first big hike of the season, the steep trail proved too much, and I couldn’t finish."

Renee's symptoms became worse, and she knew they would not pass. Then, the diagnosis: Severe Aplastic Anemia.

What she needed at that point was an expert, and AAMDSIF directed her to specialists in her region.

Each gift helps provide answers, support, and hope to patients with bone marrow failure diseases like SAA. Donate now at aamds.org/donate to support work with patients like Renee and her family, and thank you!

04/24/2026

It's time to share your experiences in this app-based study.
This study aims to capture the full spectrum of symptoms, treatment utilization, and overall Health-Related Quality of Life (HRQoL) experienced by PNH patients.
Learn more https://www.aamds.org/treatments/clinical-trials/home-reported-outcomes-pnh-mobile-app-based-prospective-observational

04/23/2026

Judy shared her story of dealing with PNH; her diagnosis was 17 years ago!
You can watch and listen to her explain the difficulty of finding a correct diagnosis, after the first alert during a blood donation drive.
She discusses why she sought more answers far from home, all the way to the National Institutes of Health! Judy describes how she found other patients with PNH, and how their consistent support gave her the courage to advocate for herself.
Judy's story shows how she became resilient, now many years past diagnosis. Don't miss out on this chance to hear her story in her own words: https://www.aamds.org/share/webinar/769

04/22/2026

Presentations at ASH provide cutting-edge updates on research and treatments. In December 2025, the ASH meeting featured several sessions on Higher Risk MDS.
If you have MDS, or Myelodysplastic Syndromes, or if you are a family member or friend, you won't want to miss this new webinar, featuring Dr. Rory Shallis.
Register now for tomorrow's webinar: https://www.aamds.org/webinar/2025-ash-updates-higher-risk-mds
Don't miss out!
Send your questions to help@aamds.org before 9am Eastern Time.

04/22/2026

For patients with MDS, or Myelodsyplastic Syndromes:
This clinical trial is recruiting patients who need specific transfusions.
Find out more or to see if you qualify, visit: https://www.aamds.org/treatments/clinical-trials/study-elritercept-treat-anemia-adults-very-low-low-or-intermediate-risk