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Hungarian Rett summer camp vibes

The Hungarian Rett Syndrome Foundation has been organizing therapeutic summer camps for girls with Rett Syndrome every year since 1995. This year they took place in Hajdúszoboszló on two occasions in July and August. Organizing a holiday with activities for the children is an important part of the foundation’s parental support programs, because during the summer […]


Share your reason for action on rare diseases! Rett syndrome is one of around 6000 rare diseases but is one the more common ones affecting 1;10,000 females and 1;40,000 males. We do not know how many people there are living in Europe with Rett syndrome but there are 30 million people living with a rare […]

Meet Ann Charlotte…

Ann-Charlotte is 73 years old and lives in Sweden. Many thanks to Ann-Charlotte, her family and Helena Wandin at The National Rett Centre in Sweden for permission to share this story in the first of our new Family Focus features. ‘Ann-Charlotte “Lottan” Holmström is most probably the oldest person with Rett Syndrome in Sweden and […]

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 […]

A busy May for RSE!

Feels like a rush hour! In just a few weeks we´ve participated in 3 different events: May 12-14 – EURORDIS Membership meeting During this 3 days online event different countries and representatives of various rare diseases shared their thoughts, struggles and experiences of this extraordinary pandemic year. Despite all the challenges of COVID we all […]

Rett UK Online Conference for Families

We are Happy to share yet another wonderful event organized by our member Rett UK. A six-day free online conference will cover a wide variety of topics and presenters. All the talks will be recorded and available for reviewing later as well. All information and registration: Rett UK Online Family Roadshow 2021 by Rett UK […]

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