Author: Laura Kanapieniene

Network Support and Research Event comming soon!

The board of Rett Syndrome Europe and our Scientific Advisory Board are delighted to announce that we have been successful in a bid for 30,000 Euros to run our Network Support and Research Event in February 2023! With the main meeting in Hungary and satellite meetings in the UK, Serbia, Croatia, Turkey, Armenia, Georgia and […]

New Gene Therapies announced

Spring 2022 has been very productive season for Rett scientists bringing hope to our families. We are happy to share some exciting news with our community. 29th March 2022 Taysha gene therapies annoucned that their Clinical Trial Application (CTA) had been approved by Health Canada. TSHA-102, which utilises the novel miRARE platform to regulate transgene expression […]

Inna´s victory

Inna is 9 years old and lives in France with her family. Her mother, Elsa Delhelle Gasnier, says that since Inna was diagnosed with Rett syndrome, their family schedule got filled with never ending medical appointments, which many times feel like a stressfull battlefield: “Appointments, appointments, always appointments… Good news and bad news… When we […]

Rett Syndrome Awareness Campaign

October is Global Rett Syndrome Awareness Month! A chance for us all to raise awareness of this rare disease! We all know as parents how devastating a diagnosis of Rett syndrome is – we see and feel the impact everyday, in everything we do. None of us chose this path but it is the one […]

Call for photos

October is Rett Syndrome Awareness month. We would like to dedicate it to the quality of life of our Rett people and raise awareness that despite all the challenges, the life of our Rett children and adults is rich in activities, joy and love. Therefore, we invite you to send us photos of Rett people […]

Hungarian Rett summer camp vibes

The Hungarian Rett Syndrome Foundation has been organizing therapeutic summer camps for girls with Rett Syndrome every year since 1995. This year they took place in Hajdúszoboszló on two occasions in July and August. Organizing a holiday with activities for the children is an important part of the foundation’s parental support programs, because during the summer […]

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 […]

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