Hemophilia Awareness Day
Columbia, SC / March 6th, 2013
Hemophilia of South Carolina (HSC)(www.hemophiliaofsouthcarolina.net), a non-profit organization that promotes awareness of hemophilia and bleeding disorders to the general public, held its 4th Annual Hemophilia Awareness Day event at the state capitol on March 6, during National Hemophilia Awareness Month. HSC provides education and supportive services to individuals and families throughout South Carolina and supports the research of the National Hemophilia Foundation (NHF) (www.hemophilia.org).
Bleeding disorders are often genetic (however, one-third of all new cases result from no family history) and cause the blood from clotting properly. The main symptom is uncontrolled, often spontaneous, internal bleeding into the joints and muscles. Left untreated, the bleeding results in severe pain, swelling, debilitating and life-threatening internal bleeding, and permanent damage. Treatment consists of life-long infusions of expensive clotting factor therapies that replace missing or deficient blood proteins. Currently, there is no cure. HSC's advocacy team members represented the Chapter's bleeding disorders community as they gathered from all over the state to share their stories, educate their elected officials and advocate for services. Continued access to care and treatment for those with bleeding disorders who have nowhere else to turn for assistance was their message for the day.
Meetings were held with 14 members of the House and Senate. Hemophilia of South Carolina was recognized on the house floor by South Carolina House Representative Tommy Stringer (R-18) and Representative Stephen Goldfinch (R-108). The Chapter and its Advocacy Team were honored to be recognized in the capitol's balcony. "This being our fourth consecutive year of Advocacy Awareness, our Chapter has conducted close to 100 face-to-face conversations with our elected officials, putting a face, a personal touch, and voice to an often difficult life-long medical condition. Most children born today with hemophilia or other related bleeding disorder can have bright futures and full lives due to the advancement in medical knowledge and technology, treatment therapies, and access to quality comprehensive care. This is what we must continue to advocate for everyday for all South Carolinians with bleeding disorders, no matter what obstacles stand in their way," stated Sue Martin, President of HSC.
Click here to download the full press release (pdf format)
March is National Hemophilia Awareness Month
Hemophilia of South Carolina, Hemophilia Awareness Days
Where: Columbia, SC | When: March 5th and 6th, 2013
Please join us in raising awareness for bleeding disorders in South Carolina
Click here to download your registration form today! (pdf format)
Click here to download the invitation letter (pdf format)
Click here to download the tentative agenda (pdf format)
Hemophilia of South Carolina and the National Hemophilia Foundation Partner to Provide Comments on Essential Health Benefits to the South Carolina Department of Insurance
Read the full letter which advocated the following for the SC bleeding disorder community:
1. Access to specialists at federally recognized hemophilia treatment centers (HTC's)
2. Access to a full range of FDA approved clotting factor products
3. Access to a range of specialty pharmacy providers
Click Here to Read the Full Letter
Advocacy and The National Hemophilia Foundation
If you want to get involved in any way in being an advocate for the hemophilia community this is the place to start. Any information in becoming involved and promoting awareness in the bleeding disorder community can be found on NHF's advocacy page.
Hemophilia Awareness Day
COLUMBIA, SC - April 16, 2010 - Hemophilia of South Carolina, or HSC, an organization that promotes awareness of bleeding disorders to the public, held their First Annual Hemophilia Advocacy Day at the Capitol in Columbia on Wednesday, March 17 which was officially declared the 2010 Hemophilia Awareness Day in the state.
Hemaware Article on Advocacy
This is an article that was featured in Hemaware, the NHF's quarterly magazine, that explains some of the obstacles facing the hemophilia community and ways to become an advocate. If you have any other concerns or issues you would like to help with, please contact us at email@example.com.