Community registration
Ask what contact information is requested, how it is used, whether it is shared with other families, and how you can update or remove it.
EVERY FAMILY BELONGS
Family registration & research participation
Understand the difference between joining a community and enrolling in a research study.
Connect through the Foundation
The Foundation offers registration to help connect people with JdVS and share community updates. Registration takes place on its own website.
Open Foundation registration (external)Research participation
A research study has its own eligibility criteria and informed consent. Community registration does not automatically enroll you in a clinical trial or guarantee access to treatment.
Protect private information
Before sharing genetic reports or health records, confirm who will receive them and use the secure method provided by the organization or research team.
Need help finding the right contact?
The Foundation lists info@jansen-devries.org for general questions. Ask about registration, family connections or current research contacts.
Email a registration questionThis page does not collect or store health information. The external service controls registration, consent and data handling.