Meeting in Lisbon devoted to Skeletal Rare Diseases

IOF joins UnBreakable Alliance in support of OI and meets with representatives of key skeletal rare disease organizations to discuss possible international collaboration and strategies.

Skeletal rare diseases represent a significant number of the world’s recognized rare diseases. Many of these complex conditions are severe, degenerative, and chronically debilitating. Unfortunately, due to the rare occurrence of these disorders, patients often face lack of health professional and public awareness, and must live with limited therapeutic options.

In order to facilitate international cooperation, the International Osteoporosis Foundation (IOF) convened a meeting in Lisbon on October 6th to discuss possible areas of collaboration. Attending societies included Osteogenesis Imperfecta Federation Europe (OIFE), OI Foundation USA, Care4 Brittle Bones, The Brittle Bone Society, and Hypophosphatasia Germany (HPP Deutschland), among other concerned organizations.

Meeting participants discussed the successes and challenges in the field, research opportunities, advocacy initiatives, and the need for education about, and greater awareness of, skeletal rare diseases among both health professionals and the general public. 

The Meeting took place just prior to the start of the successful Congress ‘OI in 2016 – Latest Developments in Osteogenesis Imperfecta’ which attracted 180 participants from 20 different countries. To show its support for Osteogenesis Imperfecta (OI), IOF became a proud member of the UnBreakable Alliance, a campaign which hopes to stimulate cooperation with the common objective of improving the lives of people with OI.

It was an excellent opportunity to discuss cooperation which would help to increase the visibility of these rare diseases, serving to promote research, educate doctors, and advocate for increased resources to support the quality of life of people with skeletal rare diseases.