Three U.S. bleeding disorder patient organizations recently received funding support for their patients’ rights advocacy campaigns.
The Milwaukee, Wisconsin, headquartered Great Lakes Hemophilia Foundation (GLHF), the New York City Hemophilia Chapter (NYCHC), and the Columbus, Ohio-based Ohio Bleeding Disorders Council (OBDC) have been awarded a CSL Behring Local Empowerment for Advocacy Development (LEAD) grant that will help them ensure that patients’ voices continue to heard in their state capitals on legislative and public policy issues.
CSL Behring is a global biotherapeutics company that develops and markets therapies used to treat hemophilia and other coagulation disorders, and operates one of the world’s largest plasma collection networks. The company established the LEAD grant program to award community-based grants of approximately $10,000 to local and regional patient organizations.
To qualify for LEAD grant support, a local group must be a recognized patient advocacy, nonprofit group with 501(c)(3) tax status representing individuals who use plasma/recombinant therapies to treat bleeding disorders, immune disorders, Alpha-1 deficiency, or other conditions. Qualifying organizations also must be currently addressing or intending to address a specific advocacy issue.
Groups may submit a proposal demonstrating how financial assistance would help them achieve their advocacy objectives. The proposal submission deadline for the next LEAD grant cycle is Oct. 31, 2017. Details on how to apply can be found on the company’s LEAD Grants page.
The three groups awarded assistance in the just-ended LEAD grant funding cycle will use the financial support to help them provide the bleeding disorder communities in the regions they represent with the tools they need to sharpen their advocacy abilities on several issues.
The Great Lakes foundation will use its LEAD grant to revitalize its grassroots advocacy program and execute its plan to lobby Wisconsin’s state legislature.
“The funds we received will enable our chapter to more actively participate in the legislative process in Wisconsin,” GLHF Executive Director Danielle Leitner Baxter said in a press release.
Leitner said the LEAD grant will help GHLF to provide education and training for volunteers and elected officials, host state legislature days, and enhance the organization’s communications capabilities to include social media, website, and email support training and establishing action alert procedures.
The Ohio Bleeding Disorders Council will use the LEAD grant to fund its 2017 advocacy priority, the Bleeding Disorders Advocacy Ambassadors (BDAA) program, which includes identifying engaged advocates around the state.
The organization also plans to develop, implement, and evaluate the effectiveness of an eight-month training program for its ambassadors that will focus on state policy issues and the BDAA’s targeted advocacy goals.
“The LEAD grant will allow us to improve patient and parent involvement in grassroots advocacy throughout Ohio,” said OBDC’s Advocacy Coordinator Randi Clites in the release.
“The BDAA program will develop patient voices in all aspects of patient advocacy from personal to federal advocacy initiatives. Our members need to know their rights and speak out on the issues that can impact their health and well-being,” Clites said.
The New York City chapter is using its LEAD grant to identify and train members of the bleeding disorders community as regional advocacy captains, whose role will be to strengthen relationships and increase engagement with key local legislators. The captains will work with the NYCHC staff to identify and train local families in cultivating greater engagement with, and broadened awareness of, issues of concern to the bleeding disorders community.
“Our LEAD grant program is now in its ninth year, and the need for patient empowerment and advocacy has never been greater,” said Dennis Jackman, CSL Behring’s senior vice president for global healthcare policy and external affairs, in the press release.
“We believe our role goes beyond developing, manufacturing and delivering lifesaving medicines,” he said. “We have an obligation to inform and impact public policy decisions to ensure all patients have access to the medicines and services they need.”
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