The events to celebrate Rare Disease Day 2012 in the United states at the NIH and at the FDA were a huge success!!!
RDD@NIH in Bethesda, MD celebrated rare diseases research efforts across the NIH, the Federal Government and the advocacy community. The FDA celebrated Rare Disease Patient Advocacy Day bringing together patient representatives, experts within and outside the FDA, patient advocates, physicians, researchers and rare disease communities.
More than 7,000 rare disorders affect over 25 million Americans and their families. One in 10 lives struggles with a rare disease! The ABDA will continue to work collectively to bring public and Congressional attention to the problems faced by patients, physicians and the industry. Few treatments have become available and patients continue to struggle with insurance programs in order to receive treatment.
\Our voices will be heard! Together, we stand strong and may some day find solutions to turn hope into treatments and possible cures.
Our deepest gratitude goes out to NORD for making these events possible!!!