Alström Global Alliance - Connecting Communities

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Let's get research ready and connect communities together - numbers of people diagnosed with Alström Syndrome are very patchy around the world, Researchers and drug developers look for this information, so why not be part of the AS Global database and help us get research ready!

Wouldn't it also be great to know how many people live in your Country with AS and who you could connect with?

Your information will be held safely and securely and any information shared such as the numbers of people diagnosed in different countries will be anonymised. We will get in touch when we need further information.

You can view our privacy policy on our website https://www.alstrom.org.uk/wp-content/uploads/2025/03/Privacy-Policy-FINAL-2025.pdf

Please get in touch if you would like further information, contact Catherine by email catherine.lewis@alstrom.org.uk

All questions relate to the person who is diagnosed with Alström Syndrome.

You can ask to have your information removed at any time, by contacting Catherine Lewis on the above email.

Further information about Alström and our work can be found on our website www.alstrom.org.uk

Email *

Full name of person diagnosed with Alström Syndrome *

Which Country do you live in?

You can also include your Address, State and Area. *

Date of birth *

YYYY

Gender at Birth *

Male

Female

Prefer not to say

Ethnicity *

Have you had a confirmed genetic diagnosis of Alström Syndrome? *

Yes

Other:

Full name of parent/carer (if applicable and you would like to include, and if the person is under the age of 18) *

You can add any further comments or queries here.

Please tick the box to confirm you consent to your information being kept on the AS Global Database. *

Tick to Confirm

Required

Please tick the box to confirm you consent to being added to the ASUK mailing list, so that we can keep you up to date with any news and research developments. *

Tick to Confirm

Required

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