Washington Governor Proclaims Feb. 28 as Rare Disease Day
Washington Governor Proclaims Feb. 28 as Rare Disease Day
IHRF Asks Governor Gregoire To Join Other U.S. Governors in Focusing Attention on Rare Diseases and Chronic IH
February 26, 2010- Washington Governor Christine Gregoire has declared February 28, 2010 as Rare Disease Day in Washington state, thanks to the efforts of the Intracranial Hypertension Research Foundation (IHRF). As part of the global campaign to increase awareness of rare diseases, including chronic intracranial hypertension (IH), IHRF contacted Governor Gregoire to ask her to issue a Rare Disease Day proclamation and join governors across the nation in focusing attention on rare diseases as a significant public health issue.
Rare Disease Day is organized annually in the United States by the National Organization for Rare Disorders (NORD). There are nearly 7000 rare diseases that impact more than 30 million (1 in 10) Americans and countless others worldwide. A rare disease is defined as affecting less than 200,000 people. Chronic IH affects thousands of people, while millions more have a disease or condition in which secondary IH can play a role.
Governor Gregoire’s proclamation recognized that people with rare diseases face many common issues including difficulty in obtaining a diagnosis and accessing treatment; limited or no treatment options; a sense of isolation; trouble being reimbursed for treatment; and few researchers studying the illness.
As a Rare Disease Day partner, IHRF has launched a grassroots public awareness campaign through the IHRF page on Facebook and the Foundation’s website, http://www.ihrfoundation.org, encouraging the IH community to contact their elected officials and local media about Rare Disease Day and chronic IH. Letters by IH patients have been published in newspapers in Michigan, Washington state, New York, and Ohio. In addition, several IH patients and their families have had their stories profiled on television and radio, including WSIL-TV (ABC affiliate) in southern Illinois, the BBC, and ITV in Wales.