Riaan Research Initiative
@RiaanResearch
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501(c)(3) non-profit organization hunting for a cure for rare and life-limiting genetic diseases that hurt children, starting with Cockayne syndrome.
New York City, NY
Joined May 2021
It's Rare Disease Day! Today, take one simple act to show your love for rare. Sign up to receive free updates: Be inspired. Share. Show your love. We need you.
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Happy Father's Day! This Father’s Day, we asked dads Rick, Bryon, Nate, and Richie questions about love, loss, strength, and what their children, who have been diagnosed with CS, have taught them. 📖 Read the intriguing Q+A:
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RT @RareDiseases: This #FathersDay, honor the dedication and determination of every #RareDadOnAMission. From seeking the best possible care….
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New preprint describing AAV9 gene therapy that extends lifespan in severe Cockayne syndrome mouse models from 22 to 189 days—surpassing many CNS gene therapies. Proudly supported and funded by @RiaanResearch, this is a huge leap for the CS community!.
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RT @luijsterburglab: This is a game changer: AAV gene therapy for Cockayne syndrome 👇.
biorxiv.org
Cockayne Syndrome (CS) is an autosomal recessive, progressive developmental and neurodegenerative disease. Approximately 30% of cases are caused by mutations in the ERCC8/CSA gene. Patients with CS...
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RT @RareRevolutionM: Calling all RARE Caregivers! . Are you a parent or caregiver for someone living with a #RareDisease or condition? We n….
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RT @RareDiseases: Tomorrow, #Congress is set to vote on legislation that would strip #Medicaid coverage and funding away from millions of r….
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On Mother’s Day, we shared “A Love That Knows No Limits”—a post featuring 10 moms of children with Cockayne syndrome. Lena, who lost her only child Kian, speaks to the depth of grief, love, and longing in a way we all can understand. 🔗 #CockayneSyndrome
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RT @RareDiseases: “Rare moms should run the world," says #RareMom Gillian, mother to 7-year-old Penelope who has a #RareDisorder. We don't….
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Happy Mother's Day! Today we are honored to share insight from 10 warrior moms raising children with Cockayne syndrome. They offer advice and open their hearts. Check it out here:
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RT @RareDiseases: A powerful photo: Terminal Tower in #Cleveland lit up in #RareDiseaseDay colors in commemoration of the 1 in 10 Ohioans,….
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"Faith lit up the room. Her smile, her presence. If anything bad was going on, Faith's laugh would take all of that away.". Please read our special tribute to a beautiful little girl who lost her life too soon.
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RT @UMassChan: Today is #RareDiseaseDay. Listen to all six episodes of @UMassChan’s Rare Diseases, Real Stories podcast to hear from famili….
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RT @RareDiseasesIE: It's #RareDiseaseDay2025 - we celebrate those living with rare diseases and their families, carers, healthcare professi….
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RT @RaidenScience: Today is Rare Disease Day—an important reminder that millions of families, including ours, fight every day for awareness….
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RT @UMassChan: Through the Courageous Parents Network, Jennifer Siedman and Blyth Taylor Lord empower parents whose children are diagnosed….
umassmed.edu
Courageous Parents Network
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RT @cure_mito: ✨Today we are sharing some of the beliefs that guide, inspire, and motivate us. Learn more and support our mission at https:….
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RT @RaidenScience: We’re joining the 25 Million Wishes campaign to celebrate the unique lives of children with rare diseases and their fami….
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Happy birthday, Raiden!.
Today is Raiden’s 5th birthday—a huge milestone for us. Statistics show that 60M children with a #raredisease don’t live to see their 5th birthday. Drop a 🎉 note for Raiden’s Bday!⬇️.🎂
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