Eligibility
Is the Registry currently available in my region, and what confirms eligibility?
What participation historically involved
- A confirmed diagnosis documented by the treating clinical team
- Review and signature of informed consent and authorization materials
- Collection of relevant past medical information
- Ongoing routine-care observations submitted by participating clinicians
- Long-term follow-up according to individual care and local procedures
Protect your privacy: Never send genetic reports, diagnosis documents, medication lists, pregnancy details, or other health records through this restored website.
Questions for your care team
Start with an informed conversation.
Consent
What information is collected, who can use it, and how can I withdraw?
Care
Does participation change my treatment, appointments, or monitoring plan?
Privacy
How are identifying data protected, and what data may be used in research?
Family
Are relatives eligible, and how is family information handled?
Pregnancy
Is there a current pregnancy sub-registry and what follow-up is involved?