Voicing your concerns with South Carolina’s elected officials is one of the best ways to affect meaningful changes in policies that remove barriers to, or provide access for, quality health care and treatment access for those living with chronic and rare diseases. Advocacy provides an important educational tool to help educate legislators and policy makers. The Collective invites our patient advocacy groups serving South Carolinian’s to join in the action of our state advocates who work to raise awareness. Learn about the various state advocacy awareness days happening at the state capitol and take part!
The Bleeding Disorders Association of South Carolina will be hosting their annual Advocacy and State Legislative Days during March, the National Bleeding Disorder Awareness Month. This event will be held live with virtual meetings available for those unable to attend in person. We will be requesting proclamations throughout the state recognizing this special awareness month and attending event ceremonies as available.
Did you know that nearly 1 in 2 Americans has diabetes or prediabetes? Our country’s diabetes epidemic includes the ever-growing number of people with Type
Members of the Bleeding Disorders Association of South Carolina gathered for training on Rare Disease Day in preparation for their Annual State Awareness and Legislative Day held on March 1st at the State Capitol in Columbia. The 2023 priorities were advocating for passing H.3618 and continued funding for the state Hemophilia Assistance Program. Together with Omni Productions, the Bleeding Disorders Association of South Carolina created a video sharing their advocacy work. Community members shared their experiences living with rare chronic conditions in an effort to raise awareness and understanding throughout the community.
Join us on Sunday, November 12 to celebrate our 13th Stroll 4 Seizure Control & 5K Fun Run! We are excited to have this year’s
February 29th, 2024 – 10am-2pm
Attend in-person or virtually to learn about innovative and impactful research going on across the sate, hear personal stories from those affected by rare disease and discover some of the important advocacy work that’s grown out of both necessity and hope.
Join the South Carolina Advocacy Coalition, Ambassadors, and members of the community as we come together to celebrate the advocacy work of the many members of the bleeding disorders community who work hard to address barriers in access to care and treatment, and to raise their voices of concerns to promote change. Learn how to be involved and what you can do to shape the future of treatment care for all affected by bleeding disorders in South Carolina and around the nation.
Join the South Carolina Advocates for Epilepsy for Percent Night at Groucho’s Deli in Summerville! Wednesday, November 15th 4-8pm
Join us on Sunday, November 5 to kick off National Epilepsy Awareness Month 2023! Purple with a Purpose is a member favorite event with all you can
Interested in joining our quarterly online support group? Our group is open to people with epilepsy and caregivers. We ask that all participants be at least 14 years old.
Our group facilitator, Paige, is a licensed Social Worker and Life Coach. Oh – did we mention that she has epilepsy? She can definitely help anyone on the same journey.
South Carolina Advocates For Epilepsy (S.A.F.E.) is hosting “Strike Out Epilepsy 3.0” on Saturday, 11/18! See more info on flyer. Don’t play but want to
It is important for you to get to know who your Senators and Representative are so you can become an Advocate for yourself and your family. The following link allows you to find your Senators and Representatives for both the South Carolina State Legislature and the U.S. Congress who are currently serving you!
To use the search tool, you will first enter your address information into the form provided and submit the search.
