FDMAS Alliance

05/29/2026

Here's the truth: $10 donations will not cure FD/MAS, but they can demonstrate that the power of community. In rare disease, small actions and community organizing become a powerful way to demonstrate that the NEED is there.

That's why # of donors can be AS IMPORTANT as $ raised. It's a rare disease numbers game that's built on dedicated community champions showing up and saying this is IMPORTANT.

has a great track record of making a BIG impact in and research. Let's keep showing up until the research reaches our lives.

Will you give to support Team FD/MAS? Every donation counts! WWW.tinyurl.com/teamfdmas2026

05/24/2026

Have you ever wondered if Team FD/MAS is actually supporting research progress?

At the FD/MAS Research Priorities Workshop, researchers shared their ongoing work on understanding and treating --their optimism in future treatments was palpable, and so many of them cited the seed grants, organized meetings, and collaboration opportunities that Team FD/aMAS and the FD/MAS Alliance provided as CRITICAL.

We have a track record of BIG wins, and after the Research Priorities Workshop, we have a road map of where we want to head next.

Your gift to Team FD/MAS this year is a vote of confidence in our community priorities and an investment in the work to bring those priorities to life. www.tinyurl.com/teamfdmas2026

05/19/2026

TOMORROW NIGHT: May 20th, 7:30 PM EDT FD/MAS LIVE in CONCERT! --Or --in the case of the first photo, at the Art Museum!

We’ll be talking about attending live events (like concerts and theater) with a rare, chronic bone condition, including tips for navigating crowded venues with a mobility device OR an invisible illness that may make the arts harder to appreciate!

Sarah will share stories of her experiences, some resources she’s used, and some ways to plan for a great event!

Register to attend on our website! https://fdmasalliance.org/get-involved/fd-mas-alliance-monthly-community-meet-up/

05/16/2026

Join FD/MAS and disability advocate May’s FD/MAS Alliance Monthly Community Meet-Up (May 20th, 7:30 pm ET).

We’ll be talking about attending live events (like concerts and theater) with a rare, chronic bone condition, including tips for navigating crowded venues with a mobility device OR an invisible illness that may make the arts harder to appreciate!

Sarah will share stories of her experiences, some resources she’s used, and some ways to plan for a great event!

register (for free) on our website..and come hang out!
https://fdmasalliance.org/get-involved/fd-mas-alliance-monthly-community-meet-up/

05/15/2026

Two weeks ago, we gathered with patients, caregivers, our new and also our time-tested spouses AND world-renowned researchers, clinical care experts, and industry (ie pharma) scientists to kick off the FD/MAS Research Priorities Workshop.

We'll be sharing more details about our discussion in the months ahead, and using the ideas generated there to guide our vision for improved healthcare and treatment outcomes.

When you give a gift to support Team FD/MAS, you're supporting the work that these fine people will advance together!

www.tinyurl.com/teamfdmas2026

05/13/2026

It's time to rally for Team FD/MAS and FD/MAS research. Here's how it goes:
--Our community has LOCKED IN for FD/MAS research, funding 22 projects on topics that are important to us (like PAIN!)
--Many of those projects have gone on to MUCH BIGGER research efforts (like $12 million+ in federal research funds and promising early results for future treatments)
--Those gains won't reach our doctors' offices if we, the community, aren't rallying together!

Start a team or give a gift (even a small donation counts!) and let's keep the momentum going!

Team FD/MAS is on a ROLL!12 years22 research projects$1.2 MILLION+ to FD/MAS Research!Led by Team Captain, Cindi Brandt, Levin, Team FD/MAS has seen the power of the U...

05/07/2026

FD/MAS Research Priorities Workshop: QUICK Recap!

Remember when we asked you to complete a survey outlining your unmet needs and challenges? Remember when we said we were getting together to create a research strategy? Well, we did it!

We still have a lot of work to do to refine and synthesize our ideas, and we have plans to publish a more complete outline of our discussion and form working groups to advance these ideas, but we wanted to share our initial report of our time together and discussion!

Stay tuned to the end to read all SIX priority areas we identified!

Do these topics resonate with you? What surprises you? What would you want to see happen next?

04/11/2026

We're hiring!

Two part-time, remote roles!

Development Associate, 15-20 hours a week
Program Coordinator, 10-15 hours a week

We'd love to find a great fit who has a passion for our mission!

Learn more about our work and the roles on our website:
https://fdmasalliance.org/careers/

04/09/2026

THERE'S STILL A CHANCE TO WEIGH IN ON OUR RESEARCH STRATEGY:

Did you miss the community survey?
Are you unable to make the trip to Philadelphia for our Research Priorities Workshop discussion?

April's meet-up is another opportunity to weigh in.

We'll be discussing the biggest challenges of living with and caring for others with FD/MAS.
What are your unmet needs?
What challenges do you face that you wish we had solutions for?
What do you want researchers (and clinicians) to know about your experience?

Join us to learn about how FD/MAS Alliance engages with and promotes research, and also to add your voice to the discussion at our upcoming workshop.

https://fdmasalliance.org/get-involved/fd-mas-alliance-monthly-community-meet-up/

04/07/2026

Attention! Our friends at Project Change have an open call for Medical Scholarships for the community!

Project Change is proud to support the incredible Fibrous Dysplasia community by offering medical scholarships to help warriors access the care they need.

If you or someone you love is living with Fibrous Dysplasia and facing medical expenses, we encourage you to apply.

✨ Apply now: www.projectchange.info
📅 Deadline: May 15, 2026
⚠️ Restrictions apply

04/02/2026

Join us April 22nd, 2026 at 7:30 pm EST to discuss FD/MAS and research.

You may have seen that FD/MAS Alliance is holding a day long workshop with patients and researchers to inform and shape the FD/MAS research agenda. We’ve surveyed the community and invited community participants to share their experience and join the discussion. Did you miss the survey? Are you unable to make the trip to Philadelphia for a day long discussion?

This meet up is another opportunity to weigh in. We’ll be discussing the biggest challenges of living with and caring for others with FD/MAS. What are your unmet needs? What challenges do you face that you wish we had solutions for? What do you want researchers (and clinicians) to know about your experience?

Join us to learn about how FD/MAS Alliance engages with and promotes research, and also to add your voice to the discussion at our upcoming workshop.