Phone within the US
1-(800)-637-0839Outside the US only
1-(609)-298-1035Address
The MDS Foundation
228 Park Ave S
PMB 118983
New York
NY 10003-1502
The MDS Foundation is a global nonprofit 501(c)(3) advocacy organization (EIN 22-3283911), supporting patients, families, and healthcare providers in the fields of MDS and related diseases for over 30 years.
© 2024 MDS Foundation. All rights reserved.
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One Voice Inspires, Many Voices Transform
Patient
In March 2024 I went to give blood (which I have been doing regularly for the last 35 years). I was told that my Hb was a bit low so had a FBC which showed a pancytopaenia (low Hb, White cells and platelets). After extensive tests and a bone marrow biopsy I was diagnosed with high risk MDS with a life expectancy of 6 -1 5 months without a stem cell transplant. In Dec 2024 I had a MUD (matched unrelated donor) stem cell transplant. Since then my cell counts have almost returned to normal (Hb is a bit low 12,5) and I was able to return to work in July 2024
Your story matters. If you'd like to contribute your experience with MDS and inspire others in our community, we invite you to share. Your voice can make a meaningful impact and offer support to those on a similar journey.
Discover genuine accounts from individuals navigating MDS. These stories reflect the real challenges and strengths within our community.
Patient
I was diagnosed with MDS ring sideroblasts in 2018. I was on Procrit for two
years and then Luspatercept for two years. my hemoglobin dropped to 7.8
and had my first transfusion on August 1, 2025. I wi…
Caregiver
My mother's MDS diagnosis was a shock to everyone. After having her annual blood work, her doctor called her into the office for a chat. She told her MD not to say she was sick because she felt too go…
Patient Advocate
From a young age, my parents instilled in me the importance of easing the burdens of others and leaving the world better than I found it. That early lesson shaped who I am and why I have always been d…