FD/MAS Alliance

The mission of the #FDMAS Alliance is to improve the lives of those living with #fibrousdysplasia and #mccunealbrightsyndrome

[FD/MAS Alliance @FDysplasia]

We are delighted to share the Request for Applications (RFA) for the 2023 Team FD/MAS MDBR Grants.
Letters of Interest (LOIs) are due no later than Friday, September 15, 2023, by 8 pm EST. Apply here: https://t.co/ChIbDa1061

[FD/MAS Alliance @FDysplasia]

Join us at the 2023 FD/MAS Community Conference before it’s too late. Don’t wait any longer; registration closes on August 25. https://t.co/Mg4ofUUY6R

[FD/MAS Alliance @FDysplasia]

The LAST DAY for Early Bird Registration for the FD/MAS Community Conference is TODAY! Get your tickets before the price increases to $400 on August 1st. Don't delay - get your ticket today! 🎟️ Register here: https://t.co/ddbZ0liwAR

[FD/MAS Alliance @FDysplasia]

2023 FD/MAS Community Conference: FACING THE FUTURE: TOGETHER tickets early bird pricing ends on July 31, and the new price will be $400. Get your tickets before it's too late! #FDMAS #2023Conference #FacingTheFuture #Together https://t.co/HaUu9z0yLd

[FD/MAS Alliance @FDysplasia]

Attention FD/MAS Community! A generous anonymous donor issued a challenge. If we raise $11, they will match it with $22K! We raised enough to fund up to 3 grants. (Each grant is $40K.) Help raise $160K & fund up to 4 MDBR research grants for FD/MAS https://t.co/SC9ku2PBdX

[FD/MAS Alliance @FDysplasia]

We still have time to collect donations through June 20th, and we need your help to CRUSH our funding goal. Let's keep the donations flowing and show our support for this important cause. Ride Team FDMAS, Ride! #FDMAS #FDMASAlliance #mdbr2023

[FD/MAS Alliance @FDysplasia]

BIG NEWS: Researchers @dental_harvard and @MassGeneralNews have been awarded $3 Million+ to study FD!Thanks to @MDBRide4Rare Team FD/MAS for research fundraising, Our Scientific Advisory Council, Patient Advocates & @CDMRP! The FD/MAS community is gaining momentum! Thank YOU!

[FD/MAS Alliance @FDysplasia]

Last call for Conference financial aid applications! There will still be ways for students/researchers to access funding (check out the Poster Exhibit awards), but NOW is the time to apply if you'd like assistance with registration or hotel room funding. https://t.co/rgXTneSpy2

[FD/MAS Alliance @FDysplasia]

REMINDER: Conference Scholarship/Financial Aid application closes THIS Monday, May 15th. If you think some relief on conference registration and/or hotel fees would make the conference more attainable for you, be sure to complete your application! https://t.co/rgXTneSpy2

[NEJM @NEJM]

In this study involving patients with fibrous dysplasia of bone, denosumab was associated with marked reductions in the serum bone markers and with bony improvement. However, rebound hypercalcemia occurred. https://t.co/cZ0rQb55Z6

#orthopedics

[FD/MAS Alliance @FDysplasia]

With gratitude on the mind, we're grateful for you and all the accomplishments you helped make possible in the last year. Check out our latest Annual Report for all the details! https://t.co/wKZeiFCemF

[FD/MAS Alliance @FDysplasia]

Our last web program of the year promises to be a good one! Dr. Alison Boyce of the NIH will discuss FD/MAS and research December 16th at 12:00 pm EST. Register and submit your questions here: https://t.co/gbdMdvNjuJ

[FD/MAS Alliance @FDysplasia]

IMPORTANT: We're planning an IN-PERSON conference (yay!) and rely on your feedback to help us plan! Please take 5 minutes to fill out this survey and let us know if you're coming and why (or why not!). THANK YOU! https://t.co/fu0cLUiNP3

[FD/MAS Alliance @FDysplasia]

Happening TODAY! Two really engaging experts share their experience with Rehabilitative Medicine for Daily Life Function with FD/MAS. Tune in live via our Facebook page at 12:00 EST to hear Dr. Scott Paul and Tiffany Meyer share their thoughts! https://t.co/4bGNVo5Rq6

[FD/MAS Alliance @FDysplasia]

People with disabilities make up the single largest minority voting bloc in the US. @respectability's Entertainment Media Apprentice Erica Mones shared her experience voting while disabled. Check it out here: https://t.co/SErJEg6066

[FD/MAS Alliance @FDysplasia]

Although FD/MAS affects men and women equally, only 23% of FD/MAS Registry respondents are men. Men, your participation is valuable! The data we gather is strongest when it reflects the full spectrum of people and experiences within our community. https://t.co/8YRI0f9QbW

[FD/MAS Alliance @FDysplasia]

FD/MAS Alliance's President and Executive Director were on the ABCs of Disability Planning podcast, sharing their story. Listen to the full episode here: https://t.co/PNTJKpNEOi

[FD/MAS Alliance @FDysplasia]

Did you know, Registry supported research has brought in over $150,000 in research funding from outside organizations? That’s your story powering research. Sign up and learn more at https://t.co/8YRI0f9QbW

#fdmasresearch #fibrousdysplasia #McCuneAlbrightsyndrome #FDMAS

[FD/MAS Alliance @FDysplasia]

If the political season has you feeling lost, here's a reminder that critical, bipartisan work is happening, and YOUR VOICE can make a difference! We're so inspired by and grateful for Brittany's work on this federal legislation! https://t.co/GFG69WZNqq #ELSA #rareadvocate

[FD/MAS Alliance @FDysplasia]

The FD/MAS Registry has been gathering patient-reported data since 2016. Collaborations with researchers have led to 4 published research articles. Are you participating in the FD/MAS Registry? You can learn more by visiting https://t.co/8YRI0f9QbW