Support Organizations (US)
Fibrous Dysplasia Support Group on Facebook, run by patient moderators.
FD Warriors, Inc., is a nonprofit that raises awareness, and offers financial assistance to people with fibrous dysplasia/McCune-Albright syndrome.
Fibrous Dysplasia Patient Stories on The Mighty.Having a disability or disease doesn’t have to be isolating. That’s why The Mighty exists. This site creates a safe platform for patients and families to tell their stories, connect with others and raise support for the causes they believe in.
McCune-Albright syndrome stories on Patient Worthy. Through education, awareness and a touch of humor, Patient Worthy’s goal is to inspire those in the rare disease community to tackle their chronic conditions, armed with the knowledge that they are not alone in their fight. We root for new treatment options, support spreading awareness and encourage the occasionally tough conversation.
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.
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 to contact the owner to request an invitation.
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.
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.
Advocacy Organizations (US)
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. It sometimes offers financial or medication assistance programs that you may be eligible for.
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.
The Kakkis EveryLife Foundation was created to “Cure The Process” 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.
ORPHANET is a database dedicated to information on rare diseases and orphan drugs.
The Craniofacial and Skeletal Diseases Branch of the National Institute of Dental and Craniofacial Research of the National Institutes of Health.
Síndrome de McCune Albright (#MAS) Brasil. Esta página é dedicada a todos que queiram saber um pouco mais sobre a Síndrome de McCune Albright (MAS) e a Displasia Fibrosa Óssea (This page is for all those who want to know about fibrous dysplasia and McCune-Albright syndrome). Temos como objetivo a troca de experiências e informações, além do apoio mútuo e suporte aos portadores e suas famílias (We aim to share our experiences and mutual support). Todos são bem vindos: pais, familiares, amigos, profissionais da área da saúde, pesquisadores, voluntários e, até mesmo, os curiosos (Patients, families, loved ones, doctors, and anyone interested in this disease is welcome). Temos um grupo fechado, 100% dedicado aos portadores de MAS, aqui no FB. Se este for o seu caso, por favor, entre em contato conosco, caso queira ingressar no grupo (There is also a closed Facebook group, please ask if you would like to join).
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
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 – firstname.lastname@example.org
L’Associazione EAMAS (European Association Friends of Mc Cune Albright Syndrome) è nata nel 1997 per dare ascolto a tutti coloro che intendono condividere ed ampliare le conoscenze sulla sindrome di Mc Cune Albright e su altre malattie genetiche rare. L’Associazione s’impegna a divulgare le informazioni raccolte ed a organizzarle in modo che costituiscano un utile contributo all’assistenza ai pazienti ed ai loro famigliari. Il personale medico troverà in questo sito informazioni e riferimenti utili allo svolgimento della professione. L’attività dell’Associazione è basata sulla partecipazione e sul contributo volontario dei soci e di tutti coloro che intendono prestare la loro opera per sviluppare le attività di promozione, della ricerca scientifica e fornire supporto ed assistenza ai pazienti ed alle loro famiglie.
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: email@example.com
Op 4 juli 2016 is Patiëntenvereniging Fibreuze Dysplasie opgericht. Deze patiëntenvereniging is een 100% vrijwilligersorganisatie voor en door patiënten. Als patiëntenvereniging staan wij voor belangenbehartiging, informatievoorziening en lotgenotencontact. Deze speerpunten uiten zich in de volgende doelen: Het vergroten van de kennis bij patiënt en zorgverlener; Het bevorderen van een snelle en juiste diagnose van de ziekte; Het bevorderen van onderzoek naar Fibreuze Dysplasie; Het onder de aandacht brengen van deze zeldzame ziekte in het algemeen.
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.
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.