RSE Membership Survey results and next steps

Many thanks to everyone who completed our Membership Survey. It is really helpful in allowing us to plan better to meet your needs and interests as members. Please take a look at a brief report of the results and our plans of action as a response to your expectations.

The aims and activities of RSE

Everyone agreed or strongly agreed that the current aims are still appropriate but could be implemented better.

In answer to the question should we have any other aims, generally this was no, but one suggestion was to develop recommendations/guidelines about best practice and care for people with Rett syndrome. Whilst we won’t develop this specifically as a separate aim because we believe it is already covered under the first aim, we will build a bank of resources that will include this. It also came up about developing a scientific advisory board and we are pleased to be able to say we have news for you on that front!

Which of the aims were the most important to you?

Making Rett syndrome better known to the public, professionals, carers and those who are directly concerned in all European countries was the most important. Then to promote as a representative European organisation, the interests of people with Rett syndrome and their families, improve communication within the European Rett community, promoting research and expanding RSE to all European countries. It was surprising that promoting research did not come out higher because it did feature more prominently in communication and updates on the website etc.

Other activities you would like us to undertake include: fundraising, connecting more globally, family camps, share more info about the activities of RSE, do more webinars etc. that are country specific and get the countries to help with translations, promote shared research calls etc.

Although organising family camps is something beyond RSE scope, we will try to improve on all the rest of your suggestions. Paige Nues of has already initiated a bi annual global meeting and we will make sure to actively participate in it. We have set up the Scientific Advisory Board to help us tackle with research sections. We will be exploring options for fundraising or organising webinars in the near future as well.

Communication with our members and broader community

As far as information on the website is concerned, it was quite a mixed bag of things that are important to you. The main thing is to keep it up to date especially on the research side. Add a DONATE button to the website was another suggestion. Everyone agreed RSE needs to increase its social media presence, so we are reviewing that as part of our communication strategy.

As for the direct communication with our members, all proposed ways of communication were valued more or less equally. We will be launching a quarterly newsletter in June and six monthly online meetings will follow in autumn. These are manageable for RSE given we are all volunteers.

Membership fee and other matters

The majority of members are happy with fee set up as it stands but some suggest corporate fundraising to cover it which is something we will explore. We will propose a wider discussion in the next GA meeting as the change of membership fee is beyond the competence of the executive board.

It was suggested to have general assemblies held online and this seems sensible unless we are able to have in person meeting at a European Congress.  

Turkey and Latvia would like help in setting up organisations there so please bear with us and we will be contacting you.

And finally, many thanks to the five members who have offered help on a voluntary basis in some capacity, again we will be in touch as soon as possible.

RSE Membership Survey results and next steps
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