CSL Behring has awarded the latest round of advocacy grants through its Local Empowerment for Advocacy Development (LEAD) program. LEAD grants support the grassroots advocacy efforts of organizations committed to helping people who use plasma-derived or recombinant therapies to manage rare and serious diseases. Grants totaling nearly $50,000 were awarded to four patient-based organizations:
Platelet Disorder Support Association (PDSA), Rockville, MD
PDSA will use its grant from CSL Behring to create four patient support groups, including an online support group for teens and a teleconference support group for young adults. The grant will also support the development of educational materials, speaker assistance and a toll-free number. PDSA is the nation's leading nonprofit health organization dedicated to supporting people with idiopathic thrombocytopenic purpura (ITP), a rare bleeding disorder that causes extremely low platelet levels.
Tennessee Hemophilia & Bleeding Disorders Foundation (THBDF), Smyrna
THBDF will use its grant from CSL Behring to launch a new program called Optimizing Care and Choice Through Triple A: Awareness, Advocacy and Action. The main objective of the program is to establish a new grassroots advocacy initiative in Tennessee for the bleeding disorders community. This includes revising and updating the state Hemophilia Program, increasing the involvement of women with bleeding disorders in the advocacy initiative and creating Emergency Medical Service treatment guidelines for individuals with bleeding disorders.
Rocky Mountain Hemophilia & Bleeding Disorders Association (RMHBDA), Bozeman, MT
RMHBDA will use its grant from CSL Behring to develop the infrastructure for a grassroots advocacy program that will include customized advocacy training for RMHBDA’s Family Camp. The grant will also help fund research and development of an advocacy guide for Montana and Wyoming, an advocacy page on the organization’s existing Web site and a statewide advocacy day.
Central California Hemophilia Foundation (CCHF), Sacramento
CCHF, a chapter of the National Hemophilia Foundation, plans to use the grant from CSL Behring to establish a Hemophilia Advocacy Action Team composed of young adults. The grant builds on CSL Behring’s Raise Your Voice! youth advocacy program by creating a team of six to10 young adults who will be trained on issues surrounding access to care, including both plasma and recombinant therapies. A mentoring program for this team will also be developed in concert with local legislators and state agency staff.
Source: CSL Behring news release dated June 23, 2010