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Aplastic Anemia and MDS International Foundation

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Aplastic Anemia and MDS International Foundation

Fighting Bone Marrow Failure Diseases through Patient Support and Research -Aplastic Anemia, MDS, PNH
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The Aplastic Anemia & MDS International Foundation (AA&MDSIF) is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and other related bone marrow failure diseases. AA&MDSIF provides answers, support and hope to thousands of patients and their families around the world.

03/08/2026

PNH is a complex disease. Treatment isn't always straightforward.
What should patients with PNH know about?
Flying? Pregnancy? Additional conditions?
Dr. Sanikommu explains the details, plus answers questions from the live audience in this recording: https://www.aamds.org/share/webinar/788

03/07/2026

As we close Aplastic Anemia, MDS, and PNH Awareness Week, we are highlighting a patient who has had several bone marrow failure diseases.
Ellen's journey lasted years as each new condition arose after another was successfully treated.
Listen and watch Ellen tell her story of strength and hope in this recording: https://www.aamds.org/share/webinar/734

03/06/2026

Aplastic Anemia, MDS, and PNH are rare diseases that are challenging to treat.
Nutrition remains important during treatment even though patients might find it difficult to eat their usual diet.
This webinar explains how to adjust eating habits and options, both during treatment and for survivorship. Watch here: https://www.aamds.org/share/webinar/774

03/05/2026

This patient-reported outcomes study will guide upcoming treatments! Your real-life responses are important. By sharing your experience, your PNH knowledge will help others.
Find out more here: https://www.aamds.org/treatments/clinical-trials/pledge-patients-long-term-experience-voydeya-danicopan-gathering-evidence

03/05/2026

“When we set out for our first big hike of the season ... I couldn’t finish.

I blamed being out of shape, but my symptoms worsened in the days that followed. I believed whatever this was would pass. I mistakenly thought going on a camping trip would help me feel better. I was wrong.”

Renee was diagnosed with a rare bone marrow failure disease: Severe Aplastic Anemia. Thanks to donors like you, she found tools with AAMDSIF that connected her with the resources she needed.

Supporting the work of AAMDSIF will continue this work, so precious to patients when they need it most.

Donate to help patients and families at aamds.org/donate

03/04/2026

Featured at 2026 March for Marrow Texas: Dianne Witter! An Aplastic Anemia and MDS survivor, Dianne will be inspiring the crowd with her story on Saturday, March 28th. Read her story and sign up for the event here https://www.aamds.org/support/community-events/march-marrow-ca-2026

03/03/2026

It's Your Week!
No matter your journey phase, we are here with you with the best in patient programs.
Download the graphic to share here: https://assets.aamds.org/images/social-Voices_of_strength_and_hope_2026.png
You are welcome to join support groups: https://www.aamds.org/support/patient-family-support-groups
And watch on-demand webinars and recordings about Aplastic Anemia, MDS, and PNH: https://www.aamds.org/education/patient-family-webinars
We invite you to explore the website at aamds.org any time!

03/02/2026

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

03/01/2026

Your Week Starts Today!
Find the downloadable graphic or other activities on the website, https://www.aamds.org !
You can spread awareness of Aplastic Anemia, MDS, and PNH throughout your community. Find out more on the website!
With thanks to Platinum Sponsor, Novartis

02/28/2026

Do you ever reflect on what having a rare disease means to you? This patient said, "Being happy with my family and don't care about yesterday and things which I can't change
and trust in modern medicine
and hope in the future."
Do you know other rare disease patients that you can talk to? AAMDSIF has several options if you'd like to chat with a group of other patients or parents here: https://www.aamds.org/support/patient-family-support-groups

02/28/2026

Rare disease means, "Being grateful to wake up one day at the time, enjoying when I have good days," says this patient.
Are you finding gratitude in your days, even when it's hard? Taking care of your mental health is important for both patient and care partners. And it's really hard when you're tired all the time! Find out more about managing these symptoms here: https://www.aamds.org/share/webinar/741

02/28/2026

It's Rare Disease Day! What do patients say about having a rare disease?
"Constant battle, courage, gratitude for support and experience, power over diagnosis and myself."
What is your experience with a rare disease, especially a bone marrow failure disease? Share in the comments, and read patient stories here: https://www.aamds.org/stories-hope

Address

401 N Washington Street, Ste 430
Rockville, MD
20850

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Website

https://www.aamds.org/donate

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