Forums/Symposia, Research, Webinars
Feb 28, 2019
11:00am - 2:00pm
Join us on Rare Disease Day for a Facebook Live Webinar. Learn about the latest developments in NF1, NF2 and Schwannomatosis and get your questions answered.
- 1:00PM - 2:00PM EST - Children's Tumor Foundation Neurofibromatosis Research Update (Brigatinib NF2, Schwannomatosis, Selumetinib NF1)
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. In the U.S., any disease affecting fewer than 200,000 people is considered rare. There are more than 7,000 rare diseases affecting 25-30 million Americans. In other words, one in ten Americans are suffering from rare diseases and more than half of them are children.
Besides dealing with their specific medical problems, people with rare diseases struggle to receive a proper diagnosis, find information and get treatment. The rarity of their conditions makes medical research more difficult. For more information on rare diseases, visit www.rarediseases.org.