MVID Patient Registry

Patient registry for parents and patients with MVID

If you are the parent or caregiver of a patient with MVID, we encourage you to join our registry via the form below.

This information will be used by the Association to communicate research and clinical trial opportunities to patients, share educational resources and help families connect with each other. Your information will never be shared for commercial purposes and will never be shared with individuals or organizations without your explicit consent.

The MVID Cure Association ensures the transparency of processing carried out using data from the MVID Patient Register in accordance with the General Data Protection Regulation (GDPR ) (EU 2016/79) and the French Data Protection Act (Loi Informatique et Libertés) of January 6, 1978, as amended.

Your data is collected securely and processed within a precise legal framework.

Click below to find out more about the processing of your personal health data:

🛡️ Legal Information Patient Data

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Your information

Enter your FIRST NAME

Enter your NAME

Please enter your email address to register

Patient information

Patient's first name

Patient name

Year of birth

Enter 4-digit year of birth (e.g. 2022)

Type

Male

Female

Patient mutation causing MVID

Myo5B

STXBP2 (Munc18-2)

STX3

UNC45A

Other

Your city of residence

Your country of residence

Customize this optional help text before publishing your form...

I agree and acknowledge that I have permission to provide contact list information about myself, my family and the person(s) affected by an MVID-related disorder. I also understand and agree that The Cure MVID Association may contact me to provide information about the disease, future research studies and trials, as well as activities and programs offered by the association. I also agree to appear anonymously on the MVID World Map.

You can unsubscribe at any time by clicking on the link in our emails.

We use Brevo as an email platform. By submitting this form, you agree to the personal data you have provided being transferred to Brevo for processing in accordance with Brevo's privacy policy.

MVID Patient Registry

Patient registry for parents and patients with MVID

Affiliated Association

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