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
Study about Males with Rett Syndrome
Dr Tim Benke, Medical Director of the Rett Center of Excellence at Colorado Children’s Hospital is the lead Principal Investigator in a study that is seeking to understand the lived experience of Males with Rett syndrome via their parent report. He would love to have responses from parents in Europe COMIRB: 23-0075PI: Dr. Tim BenkeV. […]
Jan 24 Update from Taysha
Official press release from Taysha giving more detail of their REVEAL paediatric gene therapy trial with sites in the US and UK.
Taysha Gene Therapy Trial Update
Taysha announce details of their REVEAL paediatric study in the US which is now recruiting patients.
Taysha expand age group in gene therapy trial in Canada to 12+ years.
9th World Rett Syndrome Congress
2nd to 5th October 2024 in Queensland, Australia The Rett Syndrome Association of Australia are delighted to announce that after a couple of postponements due to the pandemic the congress is very much back on! We will keep you informed here as updates are shared but also check out their website . The programme is […]
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 […]
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 […]
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 […]
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 […]