Bone Marrow/Stem Cell Transplant informational websites
Having an allogeneic bone marrow/stem cell transplant (using donor cells) gives many of us an amazing gift of a second chance at life. There are often questions surrounding this process so we’re always looking for credible resources to help us cope with this new life we’ve been given.
There are several useful sources, besides our awesome support group here at Mayo Connect of course. I felt this would be a good discussion where members who have had a bone marrow transplant can share some of the sites that they feel have been most valuable. I’ll start in the first comment and we’ll take it from there!
Please share your favorite sites below and how did they help you?
Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.
Connect

National Bone Marrow Transplant Link (nbmtLINK). It’s a nonprofit organization dedicated to serving individuals before, during, and after a bone marrow or stem cell transplant.
https://www.nbmtlink.org Here’s a list of just a few of the services they provide:
Publications and resource guides such as: ~Finance Guide for Bone Marrow/Stem Cell Transplants ~Reference Guide of Helpful Organizations ~Survivorship-coping with late effects. ~Graft Vs Host Disease ~Frequently asked Questions~Pod Casts ~Lunch & Learn events (recorded sessions if you can’t make the meeting)
~Podcasts ~Blogs ~Peer support on-call program ~Find Help ~ resource list
~National Marrow Donor Program (formerly Be the Match)
https://www.nmdp.org
Besides being a global nonprofit leader in cell therapy, they help find cures and save lives for patients with blood cancers and disorders. Their website provides a comprehensive source of supportive material for bone marrow transplant patients for pre and post transplant, survivorship guides and GVHD discussions.
This from @dwolden
BMT Infonet provides support for medical professionals as well as BMT/SCT and CAR-T therapy member, with videos, resource materials, product and events listed on their site.
https://bmtinfonet.org
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1 Reactionhttps://bloodcancerunited.org/
Provided us with information and resources as we faced diagnosis and made decisions about treatment and transplant.
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1 Reactionhttps://www.nmdp.org/
Formerly Be The Match. Our transplant team found the donor who saved my husband’s life with this resource.
One of their navigators also provided so much comfort and information early on in the transplant process. She also set us up to receive grants that helped with travel and lodging expenses.
They introduced me to a peer mentor, another spouse/caregiver who was so kind and supportive during some of the most challenging times of our transplant journey.
Best of all they provided me with a counselor who has given me free and very needed mental health support throughout this process, before, during and after transplant as we move forward in survivorship.
Can’t say enough about NMDP. They saved both of our lives.
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3 ReactionsLymphoma.org
Great organization offering extensive educational webinars & support services.
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1 ReactionI love this question.
I used Mayo mostly! You Lori made my transplant feel possible. I was just thinking about this today. I loved looking at MD Anderson and what they had to say, but nothing can match a person who had the transplant walk another through the process. Most of what you said the treatment would be like was just that. All i needed to do was live it a day at a time.
I loved the "Look Good, Feel Better" group. When you are no wearing makeup, and thinking today if you will be hit with GVHD was in my thoughts. Getting a box of make-up and women's products focused on my skin and colorings, i felt good. Zoom meetings to put on makeup, style myself wig or no wig.
I too loved Be A Match as it was called. I did not receive the resources but i got my donor.
I will check my bookmarks and come back and post.
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2 ReactionsI used to check sites such as The National Myelodysplastic Syndrome. - Clinical trials govt study.
MDS Foundation
https://www.mds-foundation.org/educational-hub/forums/
I liked reading that what City of Hope planned was what these sites said.
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