News
Latest news
Stories, statements and updates from Rett Syndrome Europe and our member associations across Europe.
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New book for children about Rett syndrome!
Ever since Rett syndrome stole Angelina’s ability to walk, talk and communicate I’ve asked myself daily, What is she thinking? How is she feeling about this or that? She’s always been very expressive and shown emotion in her face and eyes but let’s be honest, nothing replaces words. I live with a sense of…
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Mi Princesa Rett – December 16th Event
One of the Spanish associations, Mi Princesa Rett are delighted to announce an event at San Juan de Dios hospital in Barcelona on December 16th. Please see poster for more information. The team there have also recently published a new paper called Mitochondrial modulation with leriglitazone as a potential treatment for Rett syndrome. An interesting…
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Live with Rett – a honest, from the heart account.
Many thanks to Mel Lancaster, USA, for sharing her very honest thoughts on the impact of Rett syndrome for all the family. ‘Someone asked me recently, “What is the meaning of all this suffering?” Make no mistake, Rett syndrome is a lot about suffering. Labour is a suffering that has meaning – Life. A woman’s…
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International Support for Georgia
We are delighted to share the report from our colleagues in Georgia, Gvantsa and Tina, who hosted a highly experienced team from the Netherlands between the 13th and 19th October 2023. Gerna Scholte, Hanneke Borst, Kitty van der Werff, and the chairman of Parents Rett Syndrome Association Netherlands, Mariëlle van den Berg, were invited to…
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#EyeCanTalk – Ruth and her supportive environment
We are delighted to share another beautiful example of the importance and power of AAC. Ruth is a wonderful young lady from Belgium who enjoys her moments of communication so much! There is not a single doubt that being able to communicate provides a whole new quality of life and empowers our Rett people to…
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#EyeCanTalk – Johanna and Our Experience with Tobii
Continuing our Rett Syndrome and AAC Awareness Month campaign, we are honoured to share the experience of Johanna´s family and their journey with joys and challenges in their use of the Tobii device. Please join us in sharing photos, videos and stories of your daughter or son using any form of AAC. Email your photos,…
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#EyeCanTalk – Rett syndrome and AAC awareness month
It is not a coincidence that our last Family Focus story was dedicated to communication. If you haven´t got a chance to read this wonderful story yet … please do, it is very moving and takes us to our theme for Rett Syndrome Global Awareness Month. Once again, thanks to Usree and family for sharing…
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First Newsletter from MECP2 Duplication Syndrome Community – in English, German and French
Congratulations to David and colleagues for getting their first newsletter out in German, English and French! We look forward to hearing more about your work and will support your endeavours as much as we can!
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Latest update from Taysha gene therapy
Taysha today shared the latest update on their gene therapy programme with the second person now having received the therapy and a third planned for later this year. You can read their announcement and their letter to Rett community bellow.
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Call for GA Meeting and Expression of interest
As we gear up for the upcoming General Assembly Meeting, we invite passionate individuals who share our commitment to the Rett syndrome community to consider contributing to the organisation by joining the board. We seek members who are not only driven by a passion for Rett syndrome but also possess skills that can fuel our…
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