Join us for the first-ever CHI Family Meet-Upon Saturday, November 5, 2022, from 9:30 AM- 1:30 PM at the Cayton Children’s Museum in Santa Monica, California. This will be CHI’s first regional meet-up – and we hope to have more in the future in other parts of the world.
All HI families and people with HI are welcome to join us to play, visit, connect and learn more about the HI Global Registry (HIGR), the only patient-reported congenital hyperinsulinism (HI) natural history study.
This event is open to all ages. CHI welcomes children with HI, their siblings, parents, grandparents, or other extended family members to join us at the meet-up. Additionally, if you are an adult with HI, you are welcome to bring your partner, children, or other family members with you.
It will be a wonderful opportunity for children with HI, their siblings, parents, and grandparents to get to know each other. While the adult parent or caregiver learns about the importance of HIGR and patient-reported natural history for the development of new treatments, the children (with another adult caregiver) will be able to explore the museum. We will also share findings from the natural history of HI.
Agenda topics will include:
- The Rare Disease Patient Registry Movement: Where the HI Global Registry Fits In
- What am I consenting to when I join the HI Global Registry?
- What is the Experience of Participating in the HI Global Registry
- What We Have Learned so far about the Natural History of HI from the HI Global Registry
- How HIGR is Helping with the Design of Clinical trials
Everyone will gather for lunch from 12:30 PM – 1:30 PM at the museum. After lunch, families can continue to explore the museum on their own if they wish.
The Cayton Children’s Museum
Located in Downtown Santa Monica, blocks from the Pacific Ocean, the Cayton Children’s Museum offers 21,000 square feet of discovery-based exhibits and immersive play. The museum activates the power of PLAY to enrich the lives of children and their families, build stronger, more connected communities, and create a better world. They strive to nurture children of all backgrounds and abilities to become engaged citizens of the world by facilitating collaborative, experiential learning and creative expression. Explore the space: Cayton Children’s Museum
The CHI Family Meet-up is free of charge and is made possible by a 2022 Rare Meet-Up Impact Grant from Global Genes. Learn more about the grant here.
Registration
Registration includes the program, museum entry, refreshments, and lunch.
