Family network

An opportunity to get in touch with other families affected by NBIA.

By participating in the Hoffnungsbaum family network you have the opportunity to get in contact with other affected families from Germany. (A worldwide, English-speaking family network is available at NBIA Disorders Association.)

We collect the contact details and use them to compile a list, which is then made available to all participating families. For data protection reasons, we require your written declaration of consent. Click on the button below to open a PDF file. Please fill out the form, sign it and send it back to us. You will then shortly receive a list of addresses of affected families so that you can contact each other.

Please send the printed or scanned form to:

Hoffnungsbaum e.V.
Wilhelm-Gülpen-Str. 22
D-52146 Würselen

We will only use your personal data for the intended purpose, i.e. we will only forward it to affected families who have also joined the family network. Participation in the family network is independent of club membership in Hoffnungsbaum e.V.. It can be revoked at any time and is of course free of charge. Please read our Datenschutzerklärung.

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With our newsletter e-mails you will receive valuable information about NBIA. If you would like to receive additional information on individual NBIA variants or special information for researchers/clinicians in addition to the general newsletter, please click here: Subscribe to additional information

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