Lupus advocacy groups from around the country have coordinated to create a project called Lupus: Patient Voices. This is an unprecedented opportunity to share your experience of daily life with lupus. In particular, you'll have the chance to share input to help inform the FDA's future decisions about lupus treatments. The broader initiative, which is called the Lupus Patient-Focused Drug Development, seeks to accelerate the development of effective treatment options.
There are two ways to make your voice heard:
- Participate in an online survey, either as a person with lupus or a parent of a child with lupus. Share your story and experience, to help shape the future of lupus therapies.
- Join advocates from around the country for a national meeting in Washington, DC on September 25th. There will be many opportunities to share your voice, including patient panels, comment periods, and discussions.
Join a national network of advocates, chaired by the Lupus and Allied Diseases Association.
For more information, please visit https://lupuspfdd.org.