CSL Behring Awards Grants to 4 Nonprofits Representing Hemophiliacs, Other Rare Disease Patients

CSL Behring, a biotherapeutics firm based in King of Prussia, Pa., has awarded Local Empowerment for Advocacy Development (LEAD) grants of $10,000 each to four U.S. nonprofit groups that advocate for patients with hemophilia and other bleeding disorders.

The funds will help these organizations make their voices heard on Capitol Hill and in state capitals throughout the United States.

“Through our LEAD Grant program, we have awarded grants to a number of patient advocacy organizations totaling almost $1 million,” Dennis Jackman, CSL Behring’s senior vice-president for global healthcare policy and external affairs, said in a press release. “These grants help support patient empowerment and grassroots initiatives to inform and impact public policy decisions to ensure all patients have access to the therapies and services they need to remain healthy.”

Organizations receiving LEAD grants in the current funding cycle are the New England Hemophilia Association (NEHA), the Neuropathy Action Foundation (NAF), the Bleeding Disorders Association of Northeastern New York (BDANENY) and the Texas Central Hemophilia Association (TCHA).

Headquartered in Dedham, Mass., NEHA represents hemophiliacs in Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island and Vermont. The group — which is dedicated to improving the quality of life for individuals with bleeding disorders — provides a centralized reference database of diverse information sources, as well as dynamic programming and emergency financial aid.

NEHA will use its LEAD grant funding to launch the New England Bleeding Disorders Advocacy Coalition, which will consist of two representatives from each of the region’s six states. Among other things, the coalition will host an advocacy website, spotlight legislative issues and explain the respective legislative processes and scheduling in each state.

NAF, based in Santa Ana, Calif., is a nonprofit organization whose objective is to ensure that neuropathy patients have access to individualized medications, intravenous immunoglobulin and other treatments through patient empowerment and advocacy. NAF will use its LEAD grant funding to address a range of issues at the state level, including financial relief for patients who must pay maximum expenses out-of-pocket twice in a single year due to a change in or loss of employment or insurance provider.

BDANENY, based in Troy, N.Y., serves hemophiliacs and others with bleeding disorders who live in residents of 22 counties in upstate New York. The organization plans to use its LEAD grant to create a teen advocacy/youth leadership program whose objective is to boost teens’ awareness of the impact they can have in the community, and to cultivate development of future leaders.

TCHA, headquartered in Dallas, now serves the entire northern half of Texas — a region that includes more than 140 counties. The group will apply its LEAD grant funding to increased advocacy communications outreach via a printed newsletter, an e-news publication and handout material for each legislative office containing a summary of key issues affecting those with bleeding disorders.

The deadline for submitting proposals for the next LEAD grant cycle is April 30. Interested organizations may apply online.