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.
Every gift helps patients, caregivers, and healthcare professionals access life-saving resources, support, and education. Together, we can make a difference. Even a small contribution can create a big impact. Thank you for your generosity.
In honor of Blood Cancer Awareness Month (September) and World MDS Awareness Day (October 25), join a powerful movement to amplify the voices of those impacted by MDS. By sharing your story, you can help support others, increase awareness of MDS, and drive change for a cancer too often overlooked.
Together, we're building a community and a collection of stories that honors real experiences, raises awareness, and leads into MDS World Awareness Day - and beyond. Your voice is a vital part of the story. Let it be heard.
It's easy on the MDS Exchange - our online community.
Just follow these steps:
To get started, log in to the MDS Exchange. If you’re new, simply create an account—it only takes a minute.
Click on Settings in the top menu, then select Edit Profile to update your information.
Share your story in the space provided. You can also upload a photo if you’d like.
Decide whether you’d like your story to stay within the MDS Exchange community or also be featured on the MDS Foundation’s Story Wall web page.
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.
You can offer support and encouragement by commenting on their posts—and don't forget to check for any messages left on your own. Together, we can amplify the voices of MDS and help those impacted by these rare blood cancers.
By sharing your story, you help others feel less alone, raise awareness of available support, and celebrate the resilience that defines our community. Sharing your story can also help the MDS Foundation understand the priorities and unmet needs of the MDS community - so that we can help make the future better for all those impacted by MDS.
Patient
I was initially diagnosed with MDS in 2014 after a bone marrow biopsy, although prior blood tests indicate that the start predated this date. Two follow-up BMBs confirmed the diagnosis. My classificat…
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 pla…
Patient
For many years, I’ve struggled with fatigue, but I always chalked it up to being a busy mom with young children. It wasn’t until later that I realized this exhaustion was part of something much bigger…
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 startie…
Patient
Diagnosed in 8/25.
Just wondering about other people's journey through the process.
Patient
My MDS Journey
Started in 2000 – when my family doctor noticed that my HGB was going down slightly during my yearly physical. After this occurred three years in a row, he referred me to a local Hemato…
This September, for Blood Cancer Awareness Month, join the Voices of MDS campaign. Share your MDS story on the MDS Exchange to raise awareness, inspire others, and help change the future for all those impacted by MDS.