In the United States, any disease affecting fewer than 200,000 people is considered rare. To bring awareness to the general public, legislators, and health care professionals, last day of February each year is National Rare Disease Day. This year’s celebration, on Sunday, February 28, will promote the uniqueness and commonalities that unite the rare disease community.
This definition comes from the Orphan Drug Act of 1983 which recognizes more than 7,000 rare diseases affecting 25-30 million Americans. Adult, adolescent, and children dealing with rare diseases struggle to receive a proper diagnosis, find useful information, and get the timely treatment they need.
The Ohio Academy of Family Physicians (OAFP) supported House Bill 412, legislation that creates the Ohio Rare Disease Advisory Council, which was signed into law by Governor Mike DeWine. The Council will serve as an educational resource to all stakeholders about the ways in which rare disease patients interact with the health system. Gov. DeWine is currently making appointments to the Council and seeking additional applicants. Any member who is interested in serving should contact Jen Thrasher, director of boards and commissions, at the Governor’s office or call 614.644.0971.
The Council will support diseases such as Idiopathic Pulmonary Fibrosis (IPF), a chronic lung disorder characterized by thickening, stiffening, and scarring (fibrosis) of tissue within the lungs. Boehringer Ingelheim, a proud OAFP Partner in Health, offers physician and patient education on IPF including an innovative lung sound video to help clinicians’ diagnosis IPF in practice.