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.
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Learn more about our 🦓 Year of The Zebra initiative.
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Celebrating 45 Years of Share & Care
Founded in 1981, Share & Care for Rare has supported families affected by rare DNA repair disorders for over four decades.
Trichothiodystrophy
Trichothiodystrophy (TTD) is a rare genetic condition that affects how the body builds and maintains healthy cells, including hair, skin, and the nervous system. Some individuals with TTD also experience challenges related to DNA repair, which can lead to developmental delays, neurological involvement, and increased sensitivity to sunlight.
Trichothiodystrophy can vary widely in how it affects each individual, and symptoms may involve multiple systems in the body, requiring coordinated medical care.
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For a detailed medical overview, see GeneReviews® on Trichothiodystrophy
Cockayne Syndrome
Cockayne syndrome (CS) is a rare genetic, neurodegenerative condition caused by differences in how the body repairs DNA. Children with Cockayne syndrome may experience growth delays, neurological challenges, vision and hearing loss, and increased sensitivity to sunlight.
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The condition is caused by variations in genes involved in DNA repair, which can affect multiple systems in the body and lead to complex medical needs.
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For a detailed medical overview, see GeneReviews® on Cockayne syndrome.
How these conditions are related
Cockayne syndrome and some forms of Trichothiodystrophy are related through shared DNA repair pathways, including a process known as nucleotide excision repair (NER). When these repair mechanisms do not function properly, cells are less able to respond to everyday DNA damage, which can impact development and overall health.
Learn about Nucleotide excision repair (NER) :
We invite families, clinicians, and supporters to learn more about how DNA repair works — and how differences in these processes affect children with rare DNA repair disorders.
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.