Information is KEY. We know that the more information we can gather about Alström the more we can learn about the condition and improve its’ management and treatment.

You may be familiar with the little ‘Red Book’ that tracks your child’s health and developmental milestones, using this information and what you remember about your babies early years ASUK would like to start to document your child’s health information in a similar way, so that we can get a broad picture of how your baby progressed from birth through to their early years.

Working with Clinicians we have developed some questions that we hope will give Clinicians a greater understanding of infantile symptoms and when and how they appear.

If you’re willing to share some of your child’s early health information we would be very grateful if you could respond to the questionnaire that follows. It should only take around 15 minutes to fill in. We are happy to receive responses by post, email or over the telephone – whatever is easiest for you.

There are 16 questions in total, please complete each one as far as possible. Where there is a multiple-choice response please mark an ‘X’ in the box that is most applicable to your child.

You can download the questionnaire HERE

Please contact Liz if you need any assistance in completing this form on 07517 278946

Please email completed forms by the 6th September 2019 to liz.loughery@alstrom.org.uk
or post to Alström Syndrome UK, 4 St Kitts Close, Torquay TQ2 7GD

Thank you for taking the time to complete this survey,
you really are making a difference to families now and in the future.