by Glenn Mones
(from the Spring 2018 issue of Factor Nine News)
Each year in March representatives from The Coalition for Hemophilia B are among the hundreds of community members gathering from across the country for NHF’s Washington Days, the bleeding disorders community’s annual visit to our nation’s capital. The event is an
opportunity for people affected by bleeding disorders to communicate their needs and concerns to our elected officials.
Last March, during hundreds of meetings with legislators and staff members, the community of patients, families, hemophilia organizations, chapters, and medical professionals throughout the USA brought attention to the importance of maintaining the gains of the Affordable Care Act (ACA), sometimes known as Obamacare. We also called for continued funding for programs that benefit our community, including the nationwide system of federally funded hemophilia treatment centers (HTCs).
In 2019, we will raise our voices higher as we strengthen our presence and provide grants to some of our members to attend, and help ensure that the unique “B Voice” will always be included in the exchange of views and information.
That’s why we now call our ongoing advocacy program The B Voice. Through The B Voice program, we will create opportunities for community members to make their voices heard. These will include additional contacts with legislators, email campaigns, and advocacy discussions during The Coalition for Hemophilia B programs. We need everyone in the community to get involved. All of our health depends on it.
To sign up for advocacy notifications or to learn more, please visit http://www.hemob.org/advocacy/.