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US Senator Richard Blumenthal (D-CT) releases statement of support regarding Rare Cancer Day
“On Rare Cancer Day, I’m proud to stand with the National Organization for Rare Disorders to raise awareness of rare - and often deadly - cancers and to keep up the fight for cures.”
NORD and KrabbeConnect Launch KrabbeCURES to Study Globoid Cell Leukodystrophy
“KrabbeCURES is more than a versatile online system that securely collects and stores data for medical research; it is a dynamic participant-driven resource that can empower and unite the globoid cell leukodystrophy community through shared knowledge. ”
Voices of Rare Cancer: Emily’s Story
“I consider myself lucky. I was diagnosed with VHL through genetic testing at the age of 17, and was spared the horror of having to discover that I had VHL only after it had caused some catastrophic complication such as blindness, metastatic cancer, or spinal cord damage.”
Head of the Herd: Amber Freed, Founder and CEO, SLC6A1 Connect
“As a mother, I had to rise to the occasion when my son was diagnosed, but it worked out for the better to form a vision and work toward that goal. ”
