Archived News 2022

Keep an eye open on our Twitter, Facebook and other social media feeds for information regarding the 2022 Rare Diseases Day events and information.  Don't forget to keep an eye open on our partner International Organisations too ! 

FD/MAS Alliance, Patiëntenvereniging Fibreuze Dysplasie, ASOCIACIÓN DE DISPLASIA FIBROSA – ADF and European Association for McCune-Albright Syndrome  

On behalf of the founding members of the International Consortium for Fibrous Displasia, McCune-Albright syndrome (ICFDMAS), we are pleased to announce the organisation's official launch. Please see the attached document for the full press release. The mission of the International Consortium for FD/MAS is to improve the care and find solutions for the unmet needs of patients and their carers through the promotion of multi-stakeholder, collaborative, and patient-centric clinical, translational, and basic research. 

FD/MAS Alliance, Patiëntenvereniging Fibreuze Dysplasie, ASOCIACIÓN DE DISPLASIA FIBROSA – ADF, Fibrous Dysplasia Support Society UK and European Association for McCune-Albright Syndrome are announcing the launch of the International Consortium for Fibrous Dysplasia and McCune-Albright syndrome Ltd. (ICFDMAS).

We have created, developed and produced an amazing animation which we think all viewers will agree will be invaluable especially for our younger viewers affected by FD / MAS.

Please see full details here including a link to the animation video.