WELCOME TO THE FIBROUS DYSPLASIA FOUNDATION!
| BREAKING NEWS
2014 Fibrous Dysplasia Foundation
Patient & Family Conference
Videos are available on You Tube!
(Click on PODCASTS on the top bar for links to individual speakers and their Powerpoint slides.)
|FD Foundation announces patient registry agreement with the National Organization For Rare Disorders (NORD)
AWARENESS GEAR HELPS FUND THE FD FOUNDATION!
In 2012 Lauren Foster designed an awareness ribbon for the FD Foundation. Her tireless efforts to make arm bands, t-shirts, car magnets, and charms available to the FD / MAS community has produced many smiles and contributed to supporting the organization. By March 6, 2015 the FD Foundation has received over $400 from her volunteer efforts.
The image may be freely added to the websites and Facebook pages of FD/MAS related supporters and organizations. The image may also be replicated for personal use (make your own t-shirt for Rare Disease Day, bake a unique birthday cake for your beloved). Sale of goods bearing the image is restricted to raise funds for the Fibrous Dysplasia Foundation, Inc. Contact the FD Foundation for jpg versions of the ribbon logo, the FD Foundation logo or copies of the Foundation brochure for fundraising purposes.
We request that if you seek to use the ribbon in some way to raise funds for the FD Foundation that you contact us to let us know what you have in mind before embarking on your effort: firstname.lastname@example.org. The FD Foundation also asks that if you see the awareness ribbon being used in contradiction to this policy that you send the foundation an email. Such use would be a copyright infringement undermining both the foundation and Lauren Foster (who does not personally profit from the sale of awareness ribbon products).
| FOUNDATION FUNDRAISING
MILLION DOLLAR BIKE RIDE May 9, 2015
Cindi and Fred Levin are captaining a team to make the Fibrous Dysplasia Foundation eligible for $1,000,000 in research funds.
Donate to Cycle for Carly
We are asking you to join us in the Million Dollar Bike Ride on May 9th as a cyclist, fundraiser or donator to the Fibrous Dysplasia Team. We are captaining this team on behalf of our daughter Carly who has been battling this rare and painful bone disease. It is a special opportunity on two fronts. First, the money that we raise is going to a DIRECT research grant for a treatment or cure for fibrous dysplasia. Second, the Penn Orphan Disease Center will be MATCHING dollar for dollar the money we raise up to an additional $50,000. You can support the Fibrous Dysplasia Team by donating through the following links or creating your own fundraising page on behalf of someone with fibrous dysplasia.
Donate to Cycle for Carly
Create your own fundraising page
4th Grader in Canada raises over $2,000 for the FD Foundation by sharing his music.
Check out Rylan's website.
Rylan is featured on ShawTV in Edmonton, Alberta, Canada.
Rylan is featured again on TV!
Charles Kenneth Lijauco's original Song for the Broken Ones
EDUCATION: The FD Foundation provides a variety of sources of information about FD,
MAS and Cherubism, to further awareness of these diseases:
Fibrous Dysplasia Overview
McCune Albright Syndrome Overview
Diagnosis and Treatment of FD & MAS
FAQ About FD
FAQ About FD Treatment
Living with FD, MAS and Cherubism
FD FOUNDATION BROCHURE
FD FOUNDATION BROCHURE - SPANISH
The FD Foundation hosts conferences for patients and caregivers/advocates where medical practitioners present the cutting edge of research and clinical practice concerning FD and MAS in a format understandable by the general public.
SUPPORT: The FD Foundation offers a community of people familiar with FD, MAS
and Cherubism who are available to patients, their friends and families and medical
professionals through email. The regular meetings also provide a chance for the
geographically dispersed community to come together.
Become a member
Participate in the on-line support group
Physician Referral Database
Make a donation
RESEARCH: The FD Foundation promotes awareness among bone specialists and other researchers about the need for research into FD/MAS and Cherubism. The FD Foundation assists researchers on FD/MAS and Cherubism in finding participants for on-going research and will also provide research support when funds are available.
See also our LIBRARY OF ARTICLES
ADVOCACY: The FD Foundation advocates fundraising on an individual, corporate and
government level in order to promote research into diagnoses, treatments and, ultimately, a
cure for FD/MAS.
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