Cure LBSL Contact Registry

1. About this form

By filling out this form, you are helping increase our understanding of where LBSL patients, families, clinicians, and researchers are located around the world. Based on your responses, Cure LBSL will be able to create and share resources in the preferred languages of our diverse international community.

Please let us know a little bit about yourself and what types of communication you would like in the future. (Note: all questions are optional, and your data will be treated with the utmost care to protect your privacy).

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* 1. How may we address you?

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* 2. What is your first name?

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* 3. What is your last name (surname)

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* 4. What email address would you like us to use for communication?

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* 5. What language(s) do you prefer for communication?

English

Arabic

Chinese

Czech

Dutch

Estonian

Finnish

French

German

Greek

Italian

Latvian

Lithuanian

Japanese

Norwegian

Polish

Portuguese

Swedish

Russian

Spanish

Turkish

Ukrainian

Other (please specify)

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* 6. In what country do you live?

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* 7. Please send me information about:

Clinical trials

Natural History Study

LBSL Patient Registry

Research updates

New diagnosis support

School resources

Patient protocols

Conferences

Patient and family connections

Cure LBSL Newsletter

Treatments and therapies

Disability accommodations

Fundraising and donations

Partnership or collaboration opportunities

Other (please specify)

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* 8. What is your relationship to the LBSL community? (please check all that apply)

LBSL patient (confirmed or suspected diagnosis)

Carrier (confirmed or suspected)

Family member of affected individual

Patient or family member with a related condition (i.e. other leukodystrophy or mitochondrial condition)

Researcher

Clinician

Educator

Student

Friend of the cause

Prefer not to answer

Other (please specify)

Cure LBSL Contact Registry

1. About this form

Question Title

* 1. How may we address you?

Question Title

* 2. What is your first name?

Question Title

* 3. What is your last name (surname)

Question Title

* 4. What email address would you like us to use for communication?

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* 5. What language(s) do you prefer for communication?

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* 6. In what country do you live?

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* 7. Please send me information about:

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* 8. What is your relationship to the LBSL community? (please check all that apply)

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* 9. Please share anything else you would like for our team to know. We look forward to connecting with you!