Rett UK and Reverse Rett partner to promote the Rett Registry UK to all families and carers of UK individuals with Rett Syndrome
Reverse Rett and Rett UK are pleased to announce our partnership through the Rett Registry UK, to ensure that as many UK patients as possible are identified and registered as we move forward into a new era of emerging treatments for Rett Syndrome.
“Rett UK and Reverse Rett have worked together on smaller collaborative projects before but with new therapies for Rett syndrome becoming a reality, a unified approach and voice is essential for our community. Representing the UK Rett community as accurately as possible has never been as vital as it is now which is why our partnership not only makes sense but is essential.
– Rob Adamek, CEO Rett UK
“Coming together is a beginning, staying together is progress, and working together is success.” – Henry Ford
“There has never been a more important time for our community to have an accurate and reliable measure of the number of patients affected by Rett Syndrome in the UK and the ability to contact them as new therapies emerge. This collaboration on the Rett Registry UK is an essential part of our work to bring treatments home for everyone with Rett Syndrome. We are grateful to Rett UK for this opportunity to work together to make this vision a reality.”
– Rachael Stevenson, CEO Reverse Rett
About Rett Syndrome
Rett Syndrome is a post-natal neurological disorder, which most often affects little girls, around the age of 12-18 months. Estimated to affect 1:10,000 people, Rett Syndrome is most often seen in girls and women because the gene which causes Rett Syndrome is on the X chromosome, but some boys are also affected.
Most children and adults with Rett Syndrome are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopaedic issues are common. There are currently no approved treatments, but clinical trials of gene therapy aimed at addressing the underlying cause of Rett are due to start imminently.
About the Rett Registry UK
Rett Registry UK is the most comprehensive patient registry of children, young people and adults with Rett Syndrome in the UK.
The information gathered through the Rett Registry UK has helped patient organisations demonstrate the need for four Rett Syndrome clinical trials to take place in the UK to date.
The Registry enables fast and effective recruitment for and management of patients on trials, which has proven the UK a strong candidate location for future trials of emerging treatments.
Demonstrating accurate numbers of patients with Rett Syndrome in the UK is also crucial in enabling patient organisations to successfully advocate for NHS funding for emerging treatments for Rett Syndrome, as and when they have been proven safe and effective in clinical trials.
You can register your child on the Rett Registry UK HERE
About Reverse Rett:
Reverse Rett is a patient advocacy and research organisation focused on delivering treatments and a cure Rett Syndrome to everyone affected.
We’re working to improve the lives of children, young people and adults with Rett Syndrome within the UK. We fund laboratory and clinical research into treatments and a cure, manage the Rett Registry UK, support UK clinical trials of emerging treatments and provide core funding for the CIPP Rett Centre based in London.
About Rett UK:
Rett UK provides the emotional and practical support needed to deal with the everyday challenges that Rett syndrome presents. A national telephone helpline answers calls from desperately worried parents, not just at the point of diagnosis but also at key transitions and moments of crisis. Local family led support groups and a parent-to-parent contact network provide the contact with other families that is so crucial in reducing isolation. Access to high quality seminars from the UK’s leading experts on Rett syndrome at Regional Days and Family Weekends provides families with up to date, accurate information in subjects like epilepsy, spinal surgery and communication, helping them with management of the disability.
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