BENEFITING: MYOSITIS SUPPORT AND UNDERSTANDING ASSOCIATION
EVENT DATE: Feb 29, 2016
MYOSITIS SUPPORT AND UNDERSTANDING ASSOCIATION wrote -
Rare Disease Day which this year falls on one of the most rare days of all, Leap Day, is an important day for those with Myositis, a rare disease affecting only 50-75K people in the United States. The theme for Rare Disease Day 2016 is "Patient Voice" with a slogan of "Join us in making the voice of rare diseases heard." Those living with a rare disease, and their families, often feel isolated. The wider community can help to bring them out of this isolation. This is exactly in line with the Mission and Vision of Myositis Support and Understanding Association. Rare diseases often do not get the attention or funding they deserve so it falls to us to do grassroots work to keep our organization fighting for those living with Myositis. Our goal is to provide education at the patient and family level, as well as to the medical community that often knows little about Myositis. We will also continue to build upon our online support programs, provide financial assistance for medical-related expenses, and advocate for Myositis patients with legislators, insurance companies, and other medical-decision makers. Join us today, a rare day indeed, and be a part of Rare Disease Day 2016 and show the Myositis Champions that we care!