2026 cureCADASIL Patient-Investigator Meeting

  • Date: June 27, 2026
  • Time: 9:00 am – 12:30 pm CDT
  • NEW Location: Hilton Chicago/Oak Brook Hills Resort & Conference Center, 3500 Midwest Road, Oakbrook, IL 60523 (or virtually)

As part of our ongoing effort to promote Communication, Advocacy, Research, and Education, cureCADASIL will host a half-day Patient-Investigator Meeting held in conjunction with the United Leukodystrophy Foundation (ULF) Scientific Symposium and Family Conference. We invite CADASIL patients, families, friends, and caregivers to join us to learn about the recent progress being made toward CADASIL therapeutics, and updates on the research studies actively recruiting volunteers that will help get us there. There will be opportunities to talk with our clinicians and researchers, and we encourage everyone to ask questions about CADASIL and the progress toward therapeutics in a welcoming, informal setting.

Who should attend?

  • Individuals living with CADASIL
  • Family members
  • Friends
  • Caregivers
  • CADASIL clinicians & researchers

Saturday, June 27, 9:00 am – 12:30 pm CDT

Come meet your CADASIL community!
The Patient-Investigator Meeting will take place on the second day of the ULF Family Conference, with informative talks by leaders at cureCADASIL and CADASIL research investigators.

Schedule of Speakers & Agenda Coming Soon.

Registration

  • $125 per adult
  • $40 per child, under the age of 18
  • $40 to attend virtually
  • Registrations covers entry to the event and eight (8) meals at the venue

Attendees are responsible for securing their hotel room(s) at the Hilton Chicago/Oak Brook Hills Resort and Conference Center, 3500 Midwest Rd, Oakbrook, IL 60523 and making their own travel arrangements. The meeting will be in person, but if you cannot attend in person there will also be an opportunity to participate online, virtually.

Accommodations & Accessibility

Hilton Chicago/Oak Brook Hills Resort & Conference Center, 3500 Midwest Rd, Oak Brook, IL 60523

Upon registering for the event, you will receive an email confirmation with details for booking your hotel stay. The ULF room block is limited and on a first-come, first-served basis. We encourage you to register early and book your hotel as soon as possible! The last day to reserve your hotel if rooms are still available at that time is June 1, 2026.

Rooms & Rates

Price includes $14.95 USD resort charge per night, but excludes tax
1 King Bed – $183.95
2 Queen Beds – $183.95

We have a room block for King ADA rooms. If you require an ADA room, please contact Tara Nuñez at tara@ulf.org to check availability.

About the ULF Scientific Symposium and Family Conference: An annual event where affected families can access the world’s top Leukodystrophy physicians and researchers outside of the restrictions of insurance and the hospital setting. Held over two days, the Conference aims to provide the latest scientific information to keep families informed on advances in the field but also guide families on topics that will improve their overall quality of life while living with a leukodystrophy. The Conference is an invaluable experience geared toward the whole family: Affected individuals, parents and caregivers, spouses, siblings, extended family, friends, and anyone else in their support network.

The cureCADASIL Patient-Investigator Meeting is made possible in part by grant 2022-316712 from the Chan Zuckerberg Initiative DAF, an advised fund of the Silicon Valley Community Foundation.

Thank you to the United Leukodystrophy Foundation for sponsoring this event and supporting our efforts to connect with the CADASIL community.

cureCADASIL Contact Information
Email: Info@cureCADASIL.org
https://curecadasil.org/

ULF Contact Information:
United Leukodystrophy Foundation 224 N. Second Street, Suite 2 DeKalb, IL 60115
815-748-3211
https://ulf.org/