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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.
One Voice Inspires, Many Voices Transform

Patient
ive been diagnosed with MDS, 2019, and have 5q deletion, had breast cancer 16 years ago.
was on Revlimid for 5 years but it recently stopped working, was great for the 5 years...then hemoglobin startied droppong and has been since around September of 2024...
im now on Luspatercept and have been having to have blood transfusions, never had with Revlimid...only my third infusion of Luspatercept so im praying it will kick in and help me become the happy, energetic 75 year old possible...prior I was full of energy and felt balanced. Now, ive had horrible bouts of low BPressure, then spikes of high before normalizing...very frightening and exhausting.
more info available as needed. thank you and GOD bless us all!
Discover genuine accounts from individuals navigating MDS. These stories reflect the real challenges and strengths within our community.

Patient Advocate
There are moments in life that, quite literally, change you. They take your breath away, cause you to take a hard look at your life, how you are living, and force you to make a choice- to allow the t…
Patient
Two years ago in September (2023) I became very ill. I went to Urgent Care with a bad cough and just feeling bad. They diagnosed me with Bronchitis and gave me a prescription and sent me on my way. …

Patient
Hello all, I’m gonna get down to the nitty-gritty first. Feb. 26, 2025 I was diagnosed with myelodysplastic syndrome MDS with SF3B1, SRSF2, CSF3R, and SETBP1 mutations identified. But unfortunately it…
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.