News
Family Focus
Stories, statements and updates from Rett Syndrome Europe and our member associations across Europe.
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Family Focus Story
To mark Rare Disease Day 2025 we are sharing the amazing adventures of Selena – an very inspiring young lady with Rett syndrome and her equally wonderful family!
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Family Focus – Adventures in Accessibility: Exploring the World with Rett Syndrome
Many thanks to Usree and Kalika for sharing this amazing account of their trip across several European countries and India during the monsoon season! It is a such an interesting and inspirational reading but also full of really helpful tips of what to take and things to consider when travelling with someone with Rett syndrome.…
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Family Focus – Niki Konstaninou Without Wings
Many thanks to Niki and Petros who live in Cyprus for sharing their wonderful story.
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Mum in Zurich Shares her Inspirational Story
Becky Jenner, President, had the pleasure of meeting Julia Ramlogan a couple of years ago when Julia launched her new organisation to raise awareness and help progress towards a cure. We are delighted to share Julia’s story and progress with her mission. https://www.montana-zug.ch/en/news/january-2024/parent-feature-interview-with-a-super-mom-julia-ramlogan
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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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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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#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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Eye Got the Power: Milestones and Miracles in Our Rett Family’s Communication Journey
By Usree Bhattacharya It is poignant to me that the only video I have of my little girl, Kalika, speaking by mouth is the one in which she repeats after me: “I. Love. You.” When I captured that moment with my phone many years ago, I had no idea that it would be the last…
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What to do with therapy-resistant epilepsy – Katharina’s way
Katharina is now 14 ½ years old and has been epileptic since the age of three. In the beginning, the epileptic seizures manifested themselves at long intervals and were somewhat under control with medication. However, as she grew up, the seizures became more frequent and intense. Katharina also developed therapy resistance to all the medications…
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