Upcoming Conference
Minneapolis, Minnesota | July 9 - 12, 2026
Planning is underway for the next Share & Care for Rare family-scientific conference. Our conferences bring together families, clinicians, researchers, and therapists to share knowledge, build community, and support one another.
Share & Care conferences are designed for families affected by rare DNA repair disorders, including Cockayne syndrome and Trichothiodystrophy, as well as clinicians, researchers, therapists, and advocates who support this community.
Sessions typically include research updates, educational presentations, therapy-focused discussions, and opportunities for families to connect with one another.
Who the Conference Is For
More Details Coming Soon
We are currently working on the conference details and building an online registration form. Registration information will be shared as planning continues.
Please check back for updates, or follow Share & Care for Rare on social media for announcements.
What Families Can Expect
Families typically arrive throughout the day on Thursday, July 9. A welcome table will be available as families check in and begin settling in.
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The conference space includes a large atrium where families naturally begin meeting one another. For many, this is the first time seeing another child or family who truly understands life with Cockayne syndrome or Trichothiodystrophy.
A Shared Experience
Meeting another family affected by Cockayne syndrome or Trichothiodystrophy is powerful. Children often resemble one another in ways that feel both familiar and surprising.
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While online communities are meaningful, being together in person creates bonds that are lasting. The love, understanding, and shared knowledge within this community are deeply important as families travel this journey together.
Learning, Connection & Hope
Conference days typically include educational presentations from clinicians and researchers, therapy-focused discussions, and time for families to connect through shared activities.
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At Share & Care conferences, families, clinicians, and researchers learn from one another. Parents bring invaluable lived experience, researchers share scientific insight, and together we work toward improving the lives of children today and for future generations.
Thursday – Arrival & Welcome: Families arrive throughout the day and begin meeting each other at our welcome desk and sign in, pick up t-shirts and we kick off with a welcome with a dinner reception and family introductions. This first evening is about reconnecting, meeting new families, and settling in. After dinner, we plan optional activities for siblings ages 12 and up, as well as a dads’ night out, creating space for connection across the whole family.
Friday – Learning, Connection & Community: Friday typically begins with a group photo in conference shirts, followed by a full day of activities for both children and parents. The day includes educational sessions, speakers, opportunities to learn about current research and available studies, and time to hear from doctors, specialists, and researchers. Families are encouraged to ask questions, share experiences, and learn from one another. Meals are provided throughout the day, including breakfast, lunch, and dinner, along with planned group activities that bring families together in meaningful ways.
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Saturday – Education, Fun & Shared Experiences: Saturday continues with a balance of learning, fun, and connection. Families take part in additional educational sessions, therapy-focused discussions, and group activities designed to strengthen bonds and create lasting memories. Breakfast, lunch, and dinner are provided as families spend the day learning, sharing, and supporting one another. Sunday – Farewells
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Sunday is a day of goodbyes as families depart throughout the morning and early afternoon. A breakfast buffet is available before departure as families begin their journeys home.
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There will be a heated indoor pool so bring your swimsuits!
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Contact us at support@sharecarerare.org if you have any questions we can help with. Also be sure to follow us on social media facebook: @ShareCareRare (facebook group https://www.facebook.com/groups/care4rare) and InstaGram: @ShareCare4Rare