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HomeFD/MAS Community Conference

FD/MAS Community Conference 2023
Facing the Future - Together

 

What a joy to spend the weekend together!

Friday through Sunday, September 8th, 9th, & 10th, 2023
Silver Spring, Maryland, USA
Hilton Doubletree, Silver Spring, MD

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About the FD/MAS Community Conference

We proudly invite you to the FD/MAS Community Conference:  A weekend of education, connection, and collaborative research. 

The FD/MAS Alliance Community Conference aims to combine patient-centered science and real-world strategies for patients and families living with fibrous dysplasia, McCune-Albright syndrome (FD/MAS). 

This meeting coincides with the inaugural meeting of the newly incorporated International Consortium for FD/MAS (ICFDMAS), a consortium of research and patient support groups from 13 countries. The FD/MAS Alliance played a large role in forming this group – another tribute to the FD/MAS Alliance! Part of this meeting will entail updating the Management Guidelines for fibrous dysplasia/McCune-Albright syndrome.

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With Thanks to our Planning Committee

Chairs:
Chris Guest, Parent & FD/MAS Alliance Board Director
Carmel Shemmesh-Rafalowsky, FD/MAS Alliance Board Director & Patient Advisory Council Member

Brittany Anderson, Patient Advisory Council Member
Tovah Burstein, FD/MAS Alliance Community Engagement Director
Anne Corvelle, FD/MAS Alliance Board President
Nicola Deeley, FD/MAS Alliance Board Director and Patient Advisory Council Member
Suzie Doody, FD/MAS Alliance Finance and Donations Administrator
Bethany Hammond, Patient Advisory Council Member
Adrienne McBride, FD/MAS Alliance Executive Director
Voncia Monchais, Parent
Sarah Mumper, Patient Advisory Council Member

 

Thanks to our Sponsors

 

 

 


Events

Friday, September 8th – Arrivals 

  • Patient consult appointments for Registered attendees – limited availability. (Cedar Room, 1st Floor) 
  • FD/MAS community stories project–Faces of FD/MAS project– an FD/MAS Alliance video project envisioned and guided by the Patient Advisory Council (PAC). The project aims to capture the diverse experiences of those in the fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community. (Hickory Room, 1st Floor) 

Saturday, September 9th – Community Conference

Saturday will be focused on the patient and caregiver perspective. We will cover topics of clinical care and patient well-being. There will be built-in opportunities to connect with clinical experts and others in the community.

Program – Subject to change
  • 7:00 Conference Breakfast and Check-in (Magnolia Room, 4th Floor)
  • 8:00 Welcome – Anne Corvelle, Board President FD/MAS Alliance
  • 8:30 FD/MAS 101 and Endocrine Care – Dr. Michael Collins and Dr. Edward Hsiao
  • 9:45 Craniofacial Care and Orthopedic Care – Dr. Andrea Burke and Dr. Jason Malone
  • 11:00 Deep Dive Break-Out Sessions
  • Noon: Conference Lunch and Poster Hall Open (Lunch in Elm 1 & 2, 4th Floor)
  • 1:30 Pain Management – Dr. Alison Boyce and Dr. Naomi Brown
  • 2:30 Advocacy – A panel discussion with FD/MAS Advocates Brittany Anderson, Anne Corvelle, Sarah Mumper, and William Romero
  • 3:30 Deep Dive Break-Out Sessions
  • 5:00 Closing Remarks
  • 5:30 Patient-Only Happy Hour (Elm 1, 4th Floor)
  • 6:30 All Community Dinner (Magnolia, 4th Floor)

Sunday, September 10th – Meeting of the International Consortium for FD/MAS (ICFDMAS)

Sunday will focus on the state of FD/MAS research. Much of the meeting will be designed to support the collaborative efforts of the International Consortium for FD/MAS. All are welcome to attend. However, presentations will be geared toward the research community.

Program – Subject to change

CLINICAL – Chair, Dr. Kassim Javaid

Translational and Basic Science Studies – Chairs,  Dr. Michael T. Collins & Dr. Edward  Hsiao

Guideline development

Monday, September 11th – NIDCR Seminar Celebration

Seminar to Celebrate 25 Years of Fibrous Dysplasia/McCune-Albright Research

Date: September 11, 2023                                      

Time: 9:00 a.m.- 12:30 p.m. EDT

Location: Lipsett Amphitheater, Building 10, NIH campus, Bethesda, Maryland. Following the symposium, a reception and historical poster session will be held on the FAES Terrace, Building 10.

How to Join: This event is free and open to the public; no registration is required. You may attend in person or join via videocast.

Featured Speakers: Nobel Laureate in Chemistry Brian Kobilka, Former NIDDK Director Allen Spiegel, FD/MAS scientific leaders, patients, patient advocates, and NIDCR Director Rena D’Souza

For more information, including a detailed agenda, visit the event page.

In collaboration with the FD/MAS Alliance and the International Consortium for FD/MAS.

Please note that speakers and topics are subject to change. All participants are encouraged to attend the full meeting to facilitate communication between the scientific, clinical, and family communities.

Conference Safety Protocol

FD/MAS Alliance will follow CDC guidelines to ensure the safety of all participants in this event. Please check back in for details as the Conference approaches.

While Inability to Attend Insurance is included in conference registration, it’s important to note that COVID is not a covered reason for cancellation. To understand the coverage provided, please find more information here.

Poster Exhibition

To showcase and celebrate the ongoing research focused on FD/MAS clinical care and basic science, the FD/MAS Alliance will host a Poster Exhibition alongside the Community Conference. The Poster Exhibition will begin in the Magnolia room and be open to all conference participants to review.

Abstract Submission – Closed July 31st

Posters should show new or just-published material that has yet to be presented elsewhere at a prior conference or scientific event. Posters should be printed horizontally at 60” width and 48” height. There is no particular design or layout that we require. We will provide an easel, binder clips, and a hard board to which you can clip your poster. If your abstract is accepted, please plan to arrive at the venue no later than 4:30 p.m. on Friday, September 8, 2023, to set up.

Research Poster Scholarship Competition – Closed

There will be a competition to support and encourage junior faculty and trainees. To be considered, participants must submit their abstracts by June 30, 2023. Three awardees will receive admission to the Conference and a $500 stipend towards lodging and travel. Abstracts are limited to 250 words and are due by June 30th, 2023. Awardees will be acknowledged by August 1, 2023. Questions? Please email info@fibrousdysplasia.org

Sponsorship Opportunities

The FD/MAS Community Conference is made possible by donations, sponsorships, and a nominal participant registration fee. Your tax-deductible individual donation or organizational sponsorship will help ensure that this Conference is a success and promote the exchange of education, resources, and therapeutic approaches to maximize the overall quality of life and health outcomes for children, youth, and adults affected by FD/MAS.

To learn more about our 2023 FD/MAS Conference Sponsorship Opportunities, click the link below or email Adrienne McBride.

Scholarships/ Financial Aid

As of May 15, 2023,  we are no longer accepting applications for scholarships. If additional funds become available, we will reopen the portal.

Childcare

Although we cannot provide childcare services, we will assist with a referral for childcare services.

Frequently Asked Questions

Please review our Frequently Asked Questions page for answers to some of the most common questions about the Conference.