The mission of the Fibrous Dysplasia Foundation is to:
- Promote mutual support through support groups and networking opportunities
- Promote increased awareness, knowledge and understanding about fibrous dysplasia (FD), McCune-Albright syndrome (MAS), cherubism and other related diseases among medical professionals.
- Fund and encourage research into treatments and a cure for FD, MAS, cherubism and related diseases; and
- Develop and provide information and referrals for
- people with FD, MAS, cherubism and related diseases and their families
- medical professionals
- other care providers.
We fulfill our mission through several programs.
We support the development of well defined treatment protocols.
In 2010, the FD Foundation organized the 1st scientific conference to bring together pediatric and adult orthopedists, cranio-facial specialists, endocrinologists and other specialists with extensive FD/MAS experience to review current medical practices and the state of research. This conference was partially funded by the NIDCR and ORDCR units of the National Institutes of Health, and an unrestricted grant from Zimmer.
The clinical directives produced by the members of the conference were published on Orphanet and are available as open access documents. See the Orphanet PR for a list of article titles and live links to obtain them.
Our Medical Advisory Council also regularly revisits and revises the treatment guidelines you can find on our website.
We support the collection of clinical and biological data to facilitate scientific understanding and the development of palliative and curative measures.
The FD Foundation was selected by the Offices of Rare Disease Research at NIH to be part of a pilot program to develop a global rare disease registry of patients with FD and MAS. Development of the registry is ongoing.
It is expected to facilitate scientific and clinical research into the genetics, microbiology biology of FD, MAS and the efficacy of various treatment regimes. Please make a donation to support this effort.
We build patients’ support systems.
The FD Foundation has hundreds of members representing all states and multiple foreign nations. These members include patients, caregivers, and medical professionals. Many have received referral information through the database, and/or email.
Although geographically dispersed, many have also now met through FD Foundation conferences. Join our mailing list to ensure that you receive future updates from the FD Foundation. Visit our online communities page to learn more online patient support systems.
We educate FD and MAS patients, their caregivers and supporters.
The FD Foundation disperses information about FD, MAS and cherubism through this website.
The FD Foundation has organized and hosted 6 Patient & Family Conferences that convey the cutting edge of research and the state of clinical practice (craniofacial, orthopedic, endocrine and pain management) to patients and families.
DVDs of the 2005 & 2006 Patient & Family Conference presentations were prepared and distributed at cost to patients and clinicians worldwide. Current recordings from subsequent conferences (2007, 2008, 2010, 2014) are available for accessible through our Video/Podcast Library.
The FD Foundation helps link patients and doctors.
We have created a database of physicians with expertise in treating FD, MAS and Cherubism. All physicians listed in the database have been vetted by the Medical Advisory Board.
Growing our Fundraising Capabilities
The FD Foundation must expand its fundraising capabilities to sustain both our existing programs and expand our ability to support research through the registry and other programs.
To busy to fundraise? Please make a donation today, and ask your friends and family to donate as well.
Extending our reach to underserved populations
The FD Foundation created new webpages in 2012 with information about cost assistance for co-pays, prescriptions and medical travel. We hope that this expands access to proper care to patients with no or minimal health insurance.
Access to proper healthcare is limited by our ability to understand what is happening to us and what our physicians are saying. Through volunteer support, the FD Foundation was able to translate our main brochure into Spanish. But this is the bare minimum to offer those not fluent in English.
To maximize our outreach, we would like to be able to connect all non-English speaking patients with supports. Please contact us if you have the ability to translate materials into Spanish or another language, and are willing to help monolingual patients/caregivers communicate their needs to monolingual physicians.