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FD/MAS Community Conference 2023
Facing the Future - Together

Join Us

Friday through Sunday, September 8th, 9th, & 10th, 2023
Silver Spring, Maryland, USA
Hilton Doubletree, Silver Spring, MD
Click here to book your room.

 

 

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 objective of this Conference is 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 the formation of 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:
Co-Chair: Carmel Shemmesh-Rafalowsky, Board and Patient Advisory Council Member
Co-Chair: Chris Guest, Parent
Brittany Anderson, Patient Advisory Council Member
Tovah Burstein, Community Engagement Director
Anne Corvelle, Board President
Nicola Deeley, Board, and Patient Advisory Council Member
Suzie Doody, Finance and Donations Administrator
Bethany Hammond, Patient Advisory Council Member
Adrienne McBride, Executive Director
Voncia Monchais, Parent
Sarah Mumper, Patient Advisory Council Member

Thanks to our Sponsors

Events

Friday, September 8th-Arrivals 

  • Limited availability of patient consult appointments
  • FD/MAS community stories project–Faces of FD/MAS project, more to follow

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.

TENTATIVE SCHEDULE

  • 7:00 Conference Breakfast and Check-in
  • 8:00 Welcome
  • 8:30 FD/MAS 101 and Endocrine Care
  • 9:45 Craniofacial Care and Orthopedic Care
  • 11:00 Table break-outs with experts and patient moderators
  • Noon Conference Lunch and Poster Hall Open
  • 1:30 Pain Management
  • 2:45 Deep Dive Break-Out Sessions (may include transitioning care, aging, newly diagnosed)
  • 4:00 Advocacy
  • 5:00 Closing Remarks
  • 5:30 Patient-Only Happy Hour
  • 6:30 All Community Dinner

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.

TENTATIVE SCHEDULE

Monday, September 11th – NIDCR Seminar Celebration

Seminar to Celebrate 25 Years of Fibrous Dysplasia/McCune-Albright Research
Lipsett Amphitheater, Building 10, NIH Campus
10 Center Dr, Bethesda, MD 20814

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, 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

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 4:30pm on Friday, September 8, 2023, to set up.

Abstracts are limited to 250 words and are due by June 30th, 2023. Acceptance will be acknowledged by August 1, 2023.

You may submit your abstract here.

Research Poster Scholarship Competition

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

The application for a Poster Scholarship uses the same platform as the abstract submission. You may indicate your interest and eligibility for a Poster Scholarship within that form, here.

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

FD/MAS Alliance will offer a limited number of scholarships. The application process for these scholarships will close May 15th, 2023. Apply here. 

Childcare

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

Frequently Asked Questions

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