CSL Behring recently announced the organizations that will be awarded grants under its community-centered Local Empowerment for Advocacy Development (LEAD) Grant program to help and support patients in rare disease groups.
“These groups tackle complex legislative and public policy issues and ensure patients’ voices are heard on Capitol Hill and in statehouses across the U.S.,” CSL said in a press release.
The Local Empowerment for Advocacy Development Grant was awarded during the current funding cycle to New England Hemophilia Association (NEHA), Neuropathy Action Foundation (NAF), Bleeding Disorders Association of Northeastern New York (BDANENY), and Texas Central Hemophilia Association (TCHA), CSL Behring said in the release.
NEHA is using its grant to introduce and expand the New England Bleeding Disorders Advocacy Coalition.
Grant money awarded to NAH is being used to launch its grassroots network across the country “to address a number of continuity of care issues at the state level,” CSL said.
“TCHA is funding advocacy communications outreach with its grant consisting of a printed newsletter, e-news publication, and leave-behind material for each legislative office including a summary of key issues impacting the bleeding disorders community,” CSL said in the release.
BDANENY will partner with the New York State Bleeding Disorders Coalition (NYSBDC) to use the grant funding to develop a teen advocacy/youth leadership program and launch it at a retreat before the Coalition’s Legislative Day, CSL said.
“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 health care policy and external affairs, said in the 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.”