Amid ongoing discussions about the Achondroplasia drug Vosoritide in various media and community platforms, we recognize the diverse range of opinions within our community and respect everyone’s right to their views.
Regarding public discourse, especially in the media, we encourage everyone to approach discussions with awareness and respect. Show respect for adults with these conditions leading fulfilling lives, respect for personal medical choices, and empathy for those with rare conditions lacking the same research and treatment options.
Below is a statement from the National Committee on the SSPA’s approach to treatment and the range of views in our community.
SSPA National Committee
Statement about Research and emerging treatment in bone dysplasia