|
We support the development of well defined treatment protocols.
The FD Foundation is currently helping Dr. Michael Collins organize the 1st NIH sponsored 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. The meeting will seek to develop a consensus on the best current medical and surgical treatment of fibrous dysplasia, to define areas of focus for future research, and establish parameters for a registry/bio repository. This conference is planned for October 2010 and is partially funded by the NIDCR and ORDCR units of NIH. Please make a DONATION to support this effort: https://www.fibrousdysplasia.org/donations.php
We support the collection of clinical and biological data to facilitate scientific understanding and the development of palliative and curative measures.
The FD Foundation is currently laying the groundwork for a national registry/ bio-repository of patient information and specimens to facilitate scientific and clinical research into the genetics, microbiology biology of FD, MAS and Cherubism and the efficacy of various treatment regimes. Please make a DONATION to support this effort: https://www.fibrousdysplasia.org/donations.php
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 databank and or email. Although geographically dispersed, many have also now met through FD Foundation conferences.
Visit CONTACT US to join: https://www.fibrousdysplasia.org/index.php?page=9
Participate in the On-line support group: http://groups.google.com/group/fdsoldailyemail?lnk=
We educate FD and MAS patients, their caregivers and supporters.
The FD Foundation has organized and hosted 4 conferences that convey the cutting edge of research and the state of clinical practice (craniofacial, orthopedic, endocrine and pain management). See CONFERENCES for details: https://www.fibrousdysplasia.org/index.php?page=26
The FD Foundation disperses information.
DVDs of the 2005 & 2006 conferences were prepared and distributed at cost to patients and clinicians worldwide. Recordings of the 2007 and 2008 conference presentations are available for download as Podcasts from this site. See PODCASTS to download: https://www.fibrousdysplasia.org/index.php?page=27
The FD Foundation helps link patients and doctors.
We have created a database of physicians with expertise in treating FD, MAS and Cherubism. Listed physicians have been vetted by the Medical Advisory Board. See REFERRALS: https://www.fibrousdysplasia.org/referrals.php
CURRENT FD FOUNDATION EXPANSION PROJECTS
Extending our reach to underserved populations
The FD Foundation has started translating our materials into Spanish to maximize our outreach. We would like to be able to connect all non-English speaking patients with supports. Please visit CONTACT US to volunteer, if you have the ability to translate materials into Spanish or are bilingual and are willing to help monolingual patients/caregivers communicate their needs to monolingual physicians: https://www.fibrousdysplasia.org/index.php?page=9
Extending our fundraising capabilities
The FD Foundation is expanding fundraising efforts. Please see FUNDRAISING for ways that you can help: https://www.fibrousdysplasia.org/index.php?page=38
HOW THE FD FOUNDATION GOT STARTED
In 1997, Steve Hobelheinrich founded a web site to bring together persons affected by fibrous dysplasia (FD), their caretakers and partners, and medical professionals. He was motivated by the lack of information available when his 13 year-old daughter was diagnosed with the rare disease. Steve's effort clearly met a need as individuals affected by FD, McCune-Albright Syndrome (MAS) and Cherubism and a variety of medical specialists immediately registered on Fibrous Dysplasia Support On-Line (FDSOL). In 2004, membership on FDSOL topped 1500, with more than 750 registrants from the USA and other countries actively participating in a regular exchange of e-mail.
In 2003, a conversation developed on FDSOL about the need to formalize an organization to advocate for the development of research and treatment options for FD patients. Five members formed an action group to pursue the matter. The Fibrous Dysplasia Foundation incorporated in Florida in June 2004 and in July expanded the volunteer Board of Directors to 8. In October 2005 the FD Foundation received confirmation of its tax exempt charitable status under Section 501( c) (3) of the Internal Revenue Code. The Board of Directors has expanded as FD Foundation activities have broadened.
|
