As the nation’s leading nonprofit organization dedicated to improving care for sarcoidosis patients and to finding a cure for this disease, FSR has taken a leadership role in efforts to advance sarcoidosis on the nation’s health care agenda.

Sarcoidosis is the most common chronic fibrotic lung disorder in the United States. We feel strongly that policy makers can take positive actions to help patients with this disease. Collectively, we need to encourage lawmakers to pass legislation which increases research and education for sarcoidosis and improves access to care, diagnosis and treatment.

Advocacy is when individuals take action to demonstrate their support for policies at the local, state and federal levels in an effort to influence lawmakers. Patient ‘advocates’ can educate lawmakers and share their personal stories by sending an e-mail, writing a letter, placing a phone call or visiting their elected officials.

Advocacy allows individuals and groups to be heard by their members of Congress and to truly make a difference.

National Activities:

Neurosarcoidosis Workshop (January 2006) Hosted by the National Institute of Neurological Disorders and Stroke (NINDS) at the urging of patient advocates, this workshop addressed future research initiatives in neurosarcoidosis.

FAA Ruling on Portable Oxygen (August 2005) With the urging of public interest organizations, including FSR, and Senators Mike Crapo (R-ID) and Blanche Lincoln (D-AR) and Representatives Cliff Stearns (R-FL) and John Lewis (D-GA), the Federal Aviation Administration ruled that all US airlines can allow passengers using two specific models of portable oxygen concentrators (air oxygenators) onto their flights. Previously only those airlines that were certified to handle hazardous materials could accommodate passengers who needed oxygen on board. While this is an important victory, the rule permits airlines to board passengers with portable oxygen concentrators, but does not require them to do so. (The FAA does not have the authority to force airlines to comply.) Patients will have to inform the airline and provide a doctor's letter indicating the need for and their ability to use the devise. Other types of portable oxygen are not permitted for use during airline travel.

Trans-NIH Sarcoidosis Coordinating Committee (Established Fall 2004) FSR supports the ongoing efforts at the National Institutes of Health to share research activities, coordinate information on sarcoidosis, promote workshops and other activities that could be jointly sponsored by interested NIH Institutes.  Co-chaired by James Kiley and Herbert Reynolds from NHLBI, the Committee which included representatives from ORWH, NEI, NIAMS, ORD, NHGRI, NINR, NIDDK, NINDS, NIAID met in November 2004, January 2005, June 2005.