New educational videos raise awareness of Cockayne Syndrome and empower families and clinicians through trusted, real-world stories.
WATERFORD, VA, VA, UNITED STATES, February 20, 2026 /EINPresswire.com/ — Today, Share & Care Cockayne Syndrome Network, Inc. We are pleased to announce the launch of two new educational videos titled “Year of the Zebra” focusing on Cockayne Syndrome and “I Know a Zebra,” featuring President, Jackie Arias explaining Cockayne Syndrome. This initiative is in collaboration with parents within Share & Care for Rare team with Osmosis.org and Elsevier. The “Year of the Zebra” initiative is designed to raise awareness for rare diseases. The series features stories from caregivers, family members, and friends—people who “know a zebra”—sharing their experiences, struggles, and advocacy for those living with rare, often overlooked conditions.
In medicine, there is a well-known saying: “When you hear hoofbeats, think horses, not zebras.” It reminds clinicians to first consider common conditions. But for families affected by rare diseases, their children are the zebras. When zebras are overlooked, diagnoses are delayed and care becomes more complicated. By encouraging doctors to remember the zebras too, Share & Care is helping families get answers sooner and receive safer, more informed care.
The Year of the Zebra for Cockayne Syndrome premiere is set for Rare Disease Day on February 28th, 2026, and will be available on Osmosis.org / Elsevier’s medical education library, enhancing access to vital information for families, clinicians, and researchers globally. “For many years, families have described Cockayne Syndrome as a type of premature aging,” stated Arias. “These videos now clarify the reasons behind this devastating medical complex condition and provide families with a reliable resource to comprehend and communicate their child’s ultra-rare diagnosis.”
Cockayne Syndrome arises from defects in a DNA repair mechanism known as transcription-coupled nucleotide excision repair (TC-NER). When this process malfunctions, damage accumulates in continuously active tissues, such as the brain, eyes, and nervous system, resulting in accelerated aging and progressive deterioration. Other related DNA repair diseases with the same DNA repair pathway system problem, TC-NER, are Tricothiodystrophy (TTD) and Xeroderma Pigmentosum (XP). The three conditions are related but present differently and sometimes overlap with two or all three, CS |TTD |XP.
2026 Family and Scientific Conference: Share & Care will host 40 to 50 families from across the globe to gather in Minneapolis in July for the 23rd Family and Scientific Conference, organized in partnership with researchers from the University of Minnesota, Mayo Clinic, and other collaborators. The organization is led by Jackie Arias, who became involved in Share & Care after her daughter, Gigi Clark, was diagnosed with Cockayne Syndrome and passed away at 5 (five) years old in 2004.
For many families, this will be their first opportunity to meet another child with the same condition. “Families often experience years of isolation,” Arias remarked. “Connecting with others who truly understand transforms everything.” Research Progress: Current research in Minnesota is advancing the field towards potential treatments, including gene therapy. Peter Kang, MD expressed: “We are nearing the point of having a viable gene therapy ready for testing in patients with Cockayne Syndrome. The 2025 Share & Care conference provided a significant boost, and we aim to capitalize on that momentum in 2026.”
One Ph.D. scientist who participated in a previous conference shared: “Meeting individuals with Cockayne Syndrome and their families literally altered the trajectory of my scientific career.”
Another researcher later remarked that participating in the conference bolstered their dedication to making sure that laboratory efforts have a direct impact on patients and their families.
National Awareness and Advocacy: In addition to the celebration of Rare Disease Day, Share & Care will be highlighted in a unique awareness initiative spearheaded by Elsevier and Osmosis. The organization is also set to engage in an upcoming Rare Revolution Magazine social media takeover.
Arias will attend the Rare Disease Day events throughout Rare Disease Week in Washington, D.C., which are hosted by U.S. Department of Health and Human Services Secretary Robert F. Kennedy, Jr. This event will feature a new policy announcement regarding rare diseases. Additionally, Arias will be present at the National Institutes of Health on Friday, February 27th, and will engage with Rare & Ready along with other national advocacy partners during Rare Disease Week in Washington, D.C.
Call for Support: Share & Care is on the lookout for donors and volunteers to help maintain its programs, which include family support, conferences, medical travel assistance, and collaborative research efforts.
The organization invites media inquiries from journalists interested in covering local families as they prepare for the 2026 conference. All family interviews are managed through Share & Care to guarantee privacy and consent. “We cannot do this work alone,” Arias emphasized. “Families and scientists must advance together. Patients can’t wait for life-changing genetic care, we need to work together.”
About Share & Care Cockayne Syndrome Network, Inc.: Established in 1981, Share & Care provides support to families impacted by rare DNA repair disorders through education, advocacy, and collaborative research.
Discover more, volunteer, partner, sponsor or contribute at: www.ShareCareRare.org
Jacqueline Arias
Share & Care Cockayne Syndrome Network, Inc.
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I Know A Zebra | Cockayne Syndrome
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