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 […]
New Dates Announced for the 9th World Congress!
We are all hoping this will go ahead in 2022! Please make a note in your diary and keep an eye on the website as we update you with more information about the event. https://rettworldcongress.org/
Rett Syndrome Communication Guidelines are now available in English and Spanish
We are happy to share the news about the release of Spanish version of the Rett Syndrome Communication Guidelines: A handbook for therapists, educators and families. Thanks to a wonderful collaboration of Spanish Rett Syndrome Association as well as Catalan Rett Syndrome Association this is a first official translation of this outstanding resource for anyone interested […]
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 […]
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 […]
Rare Disease Day 2021
28th of February is Rare Disease Day! Today we take the opportunity to join a global community raising awareness of rare diseases. 1:17 people will be affected by a rare disease in their lifetime. View the official Rare Disease Day video: Rett Syndrome is one of Rare diseases. It affects 1:10,000 females and 1:40,000 males. […]
RettEd: How Your Child’s Data is Shaping the Future of Rett Research
Date: Tuesday, January 19Time: 1-2:30pm (EST) For the last 16 years, the NIH-funded Natural History Study for Rett Syndrome has been collecting data from over 1000 Rett families. Hear from NHS Principal Investigators, Drs. Alan Percy, Jeffrey Neul, and Eric Marsh on how your data has helped change the management of children and adults with Rett syndrome […]