Share & Care for Rare
Our Mission:
Improving the quality of life for children and families affected by Cockayne syndrome and Trichothiodystrophy through support, education and research.
Share & Care, a 501(c)(3) nonprofit, is a compassionate and experienced network of researchers, specialists, patients, and families. For over 40 years, we have proudly served the Cockayne syndrome (CS) and Trichothiodystrophy (TTD) communities with medical resources, financial assistance, diagnostic tests, patient advocacy, research opportunities, and a deeply caring support group. Our work has helped patients receive better, informed care as we educate medical experts all over the world on the unique procedures for CS and TTD.
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As our initiative grows, our network has expanded beyond just CS and TTD, connecting us with other rare diseases with overlapping characteristics. Together, we’re sharing knowledge, resources, and helping children receive the right diagnosis.
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Share & Care CS/TTD Network is led by hard-working volunteers committed to growing this movement and reaching even more families in need. But we can’t do it alone.
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Join the Share & Care family and fight for CS and TTD kids. You can help today by making a donation, becoming a volunteer, and showing your support for our families on our Facebook page.
Trichothiodystrophy
Trichothiodystrophy (TTD) is a rare genetic disorder characterized by brittle, sulfur-deficient hair and a range of possible physical and neurological issues, such as intellectual disability, photosensitivity, and developmental delays. It is caused by mutations affecting DNA repair or transcription genes.
Cockayne Syndrome
Cockayne Syndrome (CS) is a form of Progeria. CS is a rare genetic disorder characterized by growth failure, premature aging, sun sensitivity, and progressive neurological degeneration. It is caused by mutations in genes involved in DNA repair, leading to an inability to recover from UV-induced damage.
Our Work
Share & Care has proudly supported research at the following institutes:
Forgotten Diseases Foundation • Orphanet • National Institue of Health • University of Minnesota • Boston Children’s Hospital • University of Massachusetts • University of Washington • University of California San Fransisco •
Give Today
As a non-profit organization, Share & Care dedicates all of its time and resources to research and families of Cockayne syndrome and Trichothiodystrophy patients.
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It is our promise that 100% of your donation will go towards accelerating critical studies by connecting children with top research institutions, expanding study accessibility, and supporting participants and their families through our grant and resource programs.