Fibrous Dysplasia Foundation, Patiëntenvereniging Fibreuze Dysplasie, ASOCIACIÓN DE DISPLASIA FIBROSA – ADF, Fibrous Dysplasia Support Society UK, Eamas, and MASFD of France are announcing the first annual FD/MAS Global Awareness Week, between the 20th and 27th of February, 2020. FD/MAS Global Awareness Week is a coordinated international campaign to raise awareness of fibrous dysplasia and McCune-Albright syndrome (FD/MAS) and build support for public health and research that will improve the lives of FD/MAS patients. Patients, family members, and other advocates can follow the week’s events at #FDMAS2020
Fibrous dysplasia and McCune-Albright syndrome (FD|MAS) is a rare disease that can cause a wide range of issues. It is genetic, but it is not inherited from family and cannot be passed down. It can be traced to a single random mutation that occurs in the womb as a fetus develops. Symptoms range from mild to severe, and people living with FD|MAS can live full and prosperous lives. There is no cure, however, and there are no treatments to stop or slow a major symptom of the disease, the growth of malformed bones. These malformed bones cause chronic pain, weak bones that are easy to fracture, and differently-shaped bodies. Patients turn to a range of stopgap treatments, like multiple surgeries, hormonal therapeutics, and medical device implants to try and manage their disease.
The 20th of February 2020 was chosen to launch this awareness initiative because the GNAS mutation that causes FD|MAS is located on the 20th chromosome. The week-long celebration will culminate in a joined effort with other rare disease groups as the community celebrates International Rare Disease Day on February 29th. will lead nicely into Rare Disease Day activities.
Participants are encouraged to participate in this inaugural celebration by participating in FDF’s video campaign “A World without FD|MAS,” and sharing what might be different for themselves, their families, and their lives if FD|MAS could be cured. Participants can also follow along with other local and international awareness efforts by following the hashtag #FDMAS2020