BATTEN DISEASE REPRESENTED AMONG FDA PATIENT REPRESENTATIVES

ucm475291The U.S. Food and Drug Administration’s (FDA) patient representative program has existed since 1999 and is integral to fulfilling FDA’s strong commitment to ensure that the needs and choices of patients – as well as their families, caregivers, and advocates – are incorporated in ever greater ways in the work they do.

Recently, the FDA met with 21 inspirational patients and patient caregivers who have made the extraordinary commitment to become FDA patient representatives. These volunteers were in Washington to participate in a two-day Patient Representative Workshop so they can receive training that will allow them to help the FDA meet its critical responsibility of guiding the development and evaluation of safe and effective medical products.

Among these representatives were caregivers who have a personal experience with Batten disease. Sadly, each lost a young son to the disease. But in the face of this tragedy, these two mothers have advocated tirelessly to find a cure for this disease and worked to educate other parents, much like the way that our foundation was started. Here at BBDF we believe in finding hope in the face of this disease. We believe in working tirelessly to find a treatment for Batten disease and other rare diseases in the process. To read the full article on the FDA’s blog click HERE!

RELATED LINKS

http://blogs.fda.gov/fdavoice/index.php/2016/07/the-unique-voices-of-our-patient-representatives/

http://beyondbatten.org/understanding-batten/what-is-batten/

http://beyondbatten.org/events/family-night/

Batten disease on Good Morning America