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Community Event Calendar
Welcome to Our Community Calendar! Here we will post events that may be useful to the South Carolina rare disease community. If you are a patient/community organization and would like to get your event added to this calendar, please contact us at SouthCarolinaRare@gmail.com or through the Contact Form below.
December 2, 2025
RDLA Webinar: Year End Landscape for the Rare Disease Community
Location: Virtual
Organization: EveryLife Foundation For Rare Diseases
For More Information: Click Here
December 4, 2025
Rare Disease Congressional Caucus Briefing
Location: Washington D.C. or Virtual
Organization: EveryLife Foundation For Rare Diseases
For More Information: Click Here
December 4, 2025
Rise for Rare Educational Series: Navigating Health & the Holidays Webinar
Location: Virtual
Organization: Rare Disease Diversity Coalition (RDDC)
For More Information: Click Here
December 6, 2025
Columbia HDSA Support Group
Location: Virtual
Organization: Huntington's Disease Society of America - South Carolina Chapter
For More Information: Click Here
December 6, 2025
S.A.F.E. Christmas Party
Location: North Charleston, SC
Organization: South Carolina Advocates for Epilepsy
For More Information: Click Here
December 8, 2025
Intro to EveryLife Foundation For Rare Diseases
Location: Virtual
Organization: EveryLife Foundation For Rare Diseases
For More Information: Click Here
December 13, 2025
Winterfest State Meeting
Location: Columbia, SC
Organization: Bleeding Disorders Association of South Carolina
For More Information: Click Here
December 13, 2025
South Carolina Support Group
Location: Virtual
Organization: National Scleroderma Foundation
For More Information: Click Here
December 13, 2025
Charleston HDSA Support Group
Location: Virtual
Organization: Huntington's Disease Society of America - South Carolina Chapter
For More Information: Click Here
December 18, 2025
LD Barksdale Foundation Monthly Support Gropu
Location: TBD
Organization: LD Barksdale Sickle Cell Anemia Foundation
For More Information: Click Here
January 9, 2026
SC RDAC Quarterly Teams Meeting
Location: Virtual
Organization: South Carolina Rare Disease Advisory Council
For More Information: Click Here
January 10, 2026
South Carolina Support Group
Location: Virtual
Organization: National Scleroderma Foundation
For More Information: Click Here
January 14, 2026
Legislative Breakfast
Location: Columbia, SC
Organization: Bleeding Disorders Association of South Carolina (BDASC)
For More Information: Click Here
February 12, 2026
Intro to EveryLife Foundation For Rare Diseases
Location: Virtual
Organization: EveryLife Foundation For Rare Diseases
For More Information: Click Here
February 14, 2026
South Carolina Support Group
Location: Virtual
Organization: National Scleroderma Foundation
For More Information: Click Here
February 21, 2026
Fashion Breathes Life
Location: Charlotte, NC
Organization: Cystic Fibrosis Foundation - North Carolina Chapter
For More Information: Click Here
February 24 - 26, 2026
Rare Disease Week on Capitol Hill
Location: Washington, D.C. (travel reimbursements available)
Organization: EveryLife Foundation for Rare Diseases
For More Information: Click Here
February 27, 2026
2026 Rare Disease Symposium
Location: Columbia, SC
Organization: South Carolina Rare Disease Advisory Council (SCRDAC)
For More Information: Click Here
March 7, 2026
Hope Blossoms Gala
Location: Charlotte, NC
Organization: Cystic Fibrosis Foundation - North Carolina Chapter
For More Information: Click Here
March 14, 2026
South Carolina Support Group
Location: Virtual
Organization: National Scleroderma Foundation
For More Information: Click Here
April 9 - 12, 2026
Camp Brady at The Painted Turtle
Location: Lake Hughes, California (travel grants available)
Organization: US Hereditary Angioedema Association
For More Information: Click Here
April 9 - 12, 2026
2026 Annual Symposium
Location: Las Vegas, Nevada (travel grants available)
Organization: The Coalition For Hemophilia B
For More Information: Click Here
April 25, 2026
Columbia Great Strides 2026
Location: Cayce, SC
Organization: Cystic Fibrosis Foundation - South Carolina Chapter
For More Information: Click Here
May 2, 2026
Greenville SC Great Strides 2026
Location: Greer, SC
Organization: Cystic Fibrosis Foundation - South Carolina Chapter
For More Information: Click Here
May 9, 2026
Walk to Defeat ALS Lowcounty
Location: Mount Pleasant, SC
Organization: The ALS Association
For More Information: Click Here
May 16, 2026
Charleston Great Strides 2026
Location: Mount Pleasant, SC
Organization: Cystic Fibrosis Foundation - South Carolina Chapter
For More Information: Click Here
August 10 - 14, 2026
HDYO's North American Huntington's Disease Young Person Camp
Location: Camp St. Charlest, Maryland (travel scholarships available)
Organization: Huntington's Disease Youth Organization
For More Information: Click Here
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