RELATED ORGANIZATIONS
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UNITED STATES ORGANIZATIONS
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| Support Organizations |
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Fibrous Dysplasia Foundation on Facebook
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| Fibrous Dysplasia Support Online (FDSOL) is dedicated to providing answers, support, and hope for those with Fibrous Dysplasia and for their families. This is a Google group moderated by Jenny (Heinz) Kyle. Click the link and register to join. |
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The MAGIC Foundation, MAS Division, provides support and education to families affected with MAS and FD through a quarterly newsletter, annual convention, national networking and more.
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At the Paget Foundation website you will find a wealth of accurate and reliable information on Paget's disease of bone, primary hyperparathyroidism, fibrous dysplasia, osteopetrosis (not the common disease osteoporosis) and the skeletal complications of cancer.
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The Children’s Cranio Facial Foundation, a national, 501(c)3 nonprofit organization, headquartered in Dallas, Texas, addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. CCA's mission is to empower and give hope to individuals and families affected by facial differences.
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FACES: The National Craniofacial Association is dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth. FACES provides resource files of specialized craniofacial centers and other relevant resources; financial aid to those needing to travel away from home for medical assistance; quarterly newsletters providing human interest stories as well as the latest research and information on craniofacial disorders.
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| Advocacy Organizations |
| The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. |
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The Global Genes Project is a grassroots effort with a simple goal: Increase awareness for the prevalence of rare diseases and help those affected by them. While each disease may be rare when considered by itself, together they negatively impact the lives of millions of children and adults.
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| The Kakkis EveryLife Foundation was created to to CureTheProcess and focus on fixing the problems associated with developing treatments for rare disorders. The foundation’s goal is to improve the regulatory environment surrounding the approval of effective treatments. The CURETHEPROCESS Campaign strives to inspire science-driven public policy that will increase the predictability of the regulatory process for rare disease treatments. Our goal is to give even the rarest diseases access to the accelerated approval process and fulfill more completely the original intentions of the Orphan Drug Act. Click for current advocacy activity. |
| Research Organizations |
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ORPHANET is a database dedicated to information on rare diseases and orphan drugs.
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Skeletal Clinical Protocols for research conducted by the Craniofacial and Skeletal Diseases Branch of the National Institute of Dental and Craniofacial Research of the National Institutes of Health.
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INTERNATIONAL ORGANIZATIONS
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CANADA
AboutFace International was established in Toronto, Canada in 1985. Its vision is that individuals with facial differences find the confidence and courage to live their lives to the fullest. AboutFace’s mission is to facilitate emotional, peer and social support, resources, educational programs and public awareness for individuals with facial differences and their families.
PAN-EUROPEAN
The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. Eurordis' mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.
FRANCE
ASSYMCAL: ASsociation des malades porteurs du SYndrome de McCune-ALbright et de dysplasie fibreuse des os (Association for the patients affected by McCune - Albright syndrome And Fibrous dysplasia of the bones)
Le Centre des Maladies Endocriniennes Rares de la Croissance (CRMERC) a été labellisé en octobre 2005. Le centre coordonnateur est situé à l’hôpital Robert Debré à Paris (Pr Juliane LEGER). Le centre comprend 3 sites d’endocrinologie pédiatrique et 3 sites d’endocrinologie adulte au sein de l’Assistance Publique-Hôpitaux de Paris (The Center for Rare Endocrine Growth . The coordinating center is located at the Robert Debre Hospital in Paris (Prof. Juliane Leger). The center consists of 3 sites and 3 Pediatric Endocrinology Endocrinology adult sites in the Assistance Publique-Hôpitaux de Paris)
GERMANY, LUXEMBURG, SWITZERLAND & AUSTRIA
FibDys - DAS Forum für Fibröse Dysplasie Ein Diskussionsforum rund um die Krankheit Fibröse Dysplasie und artverwandter Krankheitsbilder (Jaffé-Lichtenstein, McCune-Albright, etc.). ( A discussion forum about the disease Fibrous dysplasia and from related diseases (Jaffé-Lichtenstein, McCune-Albright, etc.).
Members of the forum hold yearly meetings for those individuals interested in meeting others. These meetings are announced on the forum.
For more information about the forum or meetings contact the webmaster - FDForumMaster@aol.com or Christoph Kloth - mail@fibroese-dysplasie.info
UNITED KINGDOM
The Fibrous Dysplasia Support Society UK was formed in 2007 by a group of patients, and their carers, who are affected by Fibrous Dysplasia, McCune Albright Syndrome or Cherubism. It exists to provide information and support by sharing members knowledge and experience of the conditions with those who would like to know more.
ITALY
La FEDRA nasce a Roma il 19/03/2004 come organismo giuridico senza finalità di lucro per migliorare l’assistenza dei pazienti affetti da sindromi malformative congenite oro-maxillo-facciali e si propone come punto di riferimento e sostegno per le loro famiglie. Ind. E-mail: fedra@fedra.org
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Page last updated 10/24/2012.
Please contact info@fibrousdysplasia.org to report problems on this page.
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