Registration is now open for the International Rett Syndrome Conference in Istanbul! A unique gathering for doctors, scientists, families, and therapists! Be a part of this important event and stay up to date with the latest scientific developments in the Rett syndrome field! Register here now! The International Rett Syndrome Conference 2025 is now open […]
To celebrate Rare Disease Day 2024 one of our board members Bojana Milanov was interviewed by NORBS – the National Organisation for Rare Diseases of Serbia. Here we share her story. Many thanks Bojana. A rare disease means any disease that occurs in less than 5 people per 10,000 citizens, but a number of rare […]
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 […]
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 […]
RSE board are very pleased to present an overview of the March 2023 Network Support and Research event (see the document below). We would particularly like to draw your attention to the outcomes and action plans for each country that participated. In addition, since the event, the presentations have been translated into Spanish, Italian, Finnish, […]
Our new member from Spain – Mi Princesa Rett – are organising a football event with the “Legends of the Spanish national team” and the “Legends of the Badajoz football team” on the 30th of June 2023 at 21h. Mi Princesa Rett is a charity foundation based in Badajoz, Spain, dedicated to raising awareness and […]
Following our Network Support and Research Event we would like to share a video of Walter Kaufmann presentation “Burden of Illness in Rett Syndrome: Initial Evaluation of a Disorder-Specific Caregiver Survey”. In this talk, Walter Kaufmann will present an overview of the Burden of Illness in Rett Syndrome survey. Previous studies have shown that individuals […]
We are delighted that the Rett Syndrome Europe Network Support and Research Event was so successful. Many thanks to our funders The European Joint Programme for Rare Diseases Network Support Scheme and our sponsors Anavex, Taysha, Neurogene and Neuren for making this possible. Also thanks to our country hosts in Turkuye, Hungary, UK, Netherlands, Serbia, […]
The Rett Syndrome Association of France, AFSR are delighted to announce that they are hosting the 2023 European Congress in Marseille on 7th and 8th October 2023. The website is now live with the programme and information about the venue and accommodation. Rett Syndrome Europe will be holding their 2023 General Assembly there during the […]
We are delighted that the Rett Syndrome Europe Network Support and Research Event was so successful. Many thanks to our funders The European Joint Programme for Rare Diseases Network Support Scheme and our sponsors Anavex, Taysha, Neurogene and Neuren for making this possible. Also thanks to our country hosts in Turkuye, Hungary, UK, Netherlands, Serbia, […]
