FD/MAS Global Awareness Week

 

February 20th-27th is FD/MAS Global Awareness Week.
FD/MAS Global Awareness Week is a coordinated international campaign to raise awareness of fibrous dysplasia and McCune-Albright syndrome (FD/MAS) and build support for public health and research that will improve the lives of FD/MAS patients. In 2022 we celebrate the third annual FD/MAS Global Awareness Week.

Join Us In 2022:

This is my rare – This is my FD/MAS
FD/MAS is such a rare and complicated disease that it is very difficult to help others understand the diagnosis.  Because the disease can appear in any combination of bones, the skin and hormonal functions, every person with FD/MAS is unique, each a rare presentation of a rare disease.

This Global Awareness Week we hope to build an understanding of FD/MAS and celebrate the unique nature of each person living with this diagnosis. Join us by following the hashtag #thisismyFDMAS and tagging us in your FD/MAS Global Awareness Week posts.

 

 

 

 

 

 

 

Meet the International Consortium for FD/MAS

February 20th at 11:00 EST on Facebook live (even if you don’t have Facebook)

The international Consortium of FD/MAS (ICFDMAS) will officially launch on 20th of February, 2022. The group has met informally since 2015 as a group of researchers, clinicians, and patient advocates from around the world. Over the course of these meetings, a consensus was reached to create an international, multi-stakeholder partnership to advance research and clinical care in FD/MAS.

Hear from Dr. Natasha Appelman-Dijkstra (Director of the Center for Bone Quality at Leiden University Medical Center, The Netherlands) and Adrienne McBride (FD/MAS Alliance Executive Director), two key board members for the ICFDMAS. Bring your questions about international collaboration and the work to advance FD/MAS research.

 

 

 

 

Click here to learn more about the ICFDMAS

Pacing the Pool

Community Discussion and Film Screening:
24th February – 7:30 pm EST

In honor of FD/MAS Global Awareness Week, FD/MAS Alliance invites you to join us along with special guest, Richard Pace, for a community meet and greet and discussion.

The discussion will begin with a screening of Pacing the Pool – a short documentary film focused on the experience of fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community member Richard Pace. Richard’s life is remarkable for many reasons, and holds special significance to the Alliance as he was diagnosed with fibrous dysplasia as a young boy.

Pacing the Pool has won awards all over the world including the Best Short Documentary – LAMPA International Film Festival of socially oriented short films in October 2021.

We invite you to join us, to hear Richard’s story and to share yours.

Registration is free and required for admittance, however all demographic questions are optional and will not be shared publicly.

Register for Pacing the Pool

Here’s How You Can Participate

 

Show us your FD/MAS
We’re inviting patients and caregivers to respond to a short prompt with a photo that shows a glimpse into their personality while also hinting at their medical reality. Submit your photo here or by tagging us in your social media post.

 

 

 

Share an FD/MAS Factoid
We’ve worked with medical experts and patient advisors to come up with some shareable facts about fibrous dyspalsia, McCune-Albright syndrome. Raise awareness in your community by sharing them widely! You can find them here (soon!) or by following us on Facebook, Instagram, and Twitter. #thisismyFDMAS

 


Participate in Rare Disease Week and Earn Us Points!

During Rare Disease Week advocates can earn points by attending training webinars, events, meeting with their legislators, and completing other actions. The top 50 point-earners from the week will win a grant ranging from $1,000 to $5,000 for their non-profit organization.  Register here.

 

 

Supporting the FD/MAS Alliance
Join the Charlie’s Angels Monthly Giving Circle. Even a small monthly donation goes a long way!  We believe that when we come together, we can advance new research, open up new treatment options, spark new hope, and improve the lives of those affected by FD/MAS. Join the movement here.