The SC Hemophilia and Bleeding Disorders Advocacy Coalition
The Coalition’s Mission: To Empower the Hemophilia and Bleeding Disorders Community in South Carolina to speak to public and private decision-makers about improving Access to Quality and Affordable Health Care and Treatment.
We are thankful to the Advocacy Coalition Committee Members who came together from all regions throughout the state and nationally to form the South Carolina Hemophilia and Bleeding Disorders Advocacy Coalition (SCHBDAC). Our commitment to Hemophilia of South Carolina and all South Carolinians affected by bleeding disorders is to improve access to Quality Care and Treatment. Improving lives is our mission.
Hemophilia of South Carolina is a proud recipient of the Advocacy & Public Policy Chapter of Excellence Award of the National Hemophilia Foundation in recognition of our commitment to advocacy and education initiatives both at the state and local level, aimed at improving the lives of those in the bleeding disorders community. We scored in the top 15% of Chapters who participated in the review process. Learn how you can help make a difference—join our advocacy efforts today!
Meet the Coalition Members
Chairman - Shawn Sperry - Greenville County
Vice Chairman - Cristal Day - Pickens County
Secretary - Wendy Legrand - Berkeley County
HSC Executive Director - Sue Martin - Greenville County
HSC Public Policy and Advocacy Assistant - Jeremy Williams - Greenville County
HSC Board Member / HFA Advocacy Committee - Bonnie Phifer - Richland County
HSC Member - Renita Johnson - Hemophilia of South Carolina
HSC Member - Shelley Crisp - Berkeley County
HSC Member - Amy Newman - Greenville County
Stakeholder Members
- NHF Government Relations Specialist / Public Policy - Brendan Hayes
- HFA Associate Director, Policy / - Miriam Goldstein
- PSI Director of Government Relations - Jim Romano
- Senior Manager / US Patient Advocacy / CSL Behring - Karla White
- Lead, US Regional Patient Advocacy / Shire - Keith Bish
- NORD, Associate Director - Kristen Angell
- NORD, State Ambassador-SC Rare Action - Kerri Nelson
- Chronic Disease Coalition - Partnership Director - Samantha Siegner
- Senior Manager / State Government Affairs / Southeastern, US / CSL Behring - Tony Mitchell
- Senior Manager / State Government Affairs / Genentech - Michael Paredes
Advocacy Ambassadors
A vital component of the Advocacy Coalition is the Ambassador Program, which comprises volunteer members in leadership positions tasked with establishing a strong grassroots network of bleeding disorders advocates throughout the state. Ambassadors serve as liaisons between the Advocacy Coalition and the public, focusing on increasing awareness of rare bleeding disorders and the challenges individuals and their families affected by them face.
- Jameelah Malcolm representing Lexington County
- Paige Hughes representing Berkeley County
- Martha Breitweiser representing Pickens County
- Mike & Sherlene Maloy representing Dorchester County
- Tiffany Maness representing Richland County
- Jennifer Sperry representing Greenville County
- Bradley Odac representing Lexington County
- Mike and Ann Ravan representing Spartanburg County
- Edna Rabb representing Fairfield County
- Will and Lori Beaty representing York County
- Mike Walden representing Union County
- Tameelah Dawson representing Lexington County
- April Baird representing Lauren County
- Virgina Snead representing Laurens County
- Connie and Dwayne Graham representing Georgetown County
- Christine Evans representing Lexington County
- MaRee Johnson representing York County
Partner Organizations
- National Organization for Rare Diseases (NORD)
- The South Carolina Hemophilia Treatment Center, Dr. Stephanie Phillips Ambrose, Director, Center for Blood Disorders
- South Carolina Department of Health and Environment Control, Children with Special Healthcare Needs
- Friends of NCBDDD Advocacy Coalition
- Chronic Disease Coalition
- National Hemophilia Foundation
- Hemophilia Federation of America
- Patient Services, Inc.
Patient Assistance
- Patient Assistance Cheat Sheet
- LogistiCare- South Carolina Member Network for Transportation / Medicaid Services
Insurance Tools For Young Adults
- Turning 26, now what?
- NHF Insurance Toolkit
Advocacy News
- PSI Advocacy Action Alerts
- NHF Advocacy Action Alerts
- HFA Advocacy Action Alerts
GOVERNMENT OFFICIALS, MEDICAL & POLICY EXPERTS, AND PATIENT ADVOCATES MEET IN COLUMBIA FOR BLEEDING DISORDERS FORUM
(Greenville, South Carolina) — On Thursday, August 16, and Friday, August 17, 2018, approximately 47 policy experts, government officials, medical professionals, and bleeding disorders advocates, met in Columbia, South Carolina, to address access to healthcare issues at a forum titled The South Carolina Challenge, coordinated by Hemophilia of South Carolina (HSC) and their Advocacy Coalition.