Call for RSE membership update

Dear Friends,

As you are aware, RSE recently appointed a new board. We have been busy over the last couple of months reviewing things and thinking about future work etc. We are very keen to hear from our members; what is important to you, how can RSE help you and your families, what sort of information you would like from us and how often. To this end, we have put together a short survey (should take no more than 10 minutes to complete). This has been emailed today to the contacts we currently have for members either of that country’s association or an individual who is representing their country where there is not a formally recognised Rett syndrome association.

In addition, we would like to take this opportunity to check we hold the correct, most up to date contact details for your lead person in your Rett syndrome association, or for you, if you are an individual representing your country. These forms are attached to the email.

If you have not received the email and think you should have, or you are a country (with an Rett syndrome association or an individual representing that country) that has not previously been a member of RSE but would now like to join, please fill in the corresponding form attached below and email us at We would love to have you join us 🙂

Your help with these matters is very much appreciated. We are all really looking forward to working with you to develop RSE as an organisation that works well for you and your families.

You may also complete the survey from this link below but we do still need your up to date contact details too. The forms are in the email. Thank you 🙂

Download RSE Membership Application Form:

Call for RSE membership update
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