The registry is a critical component of our work to deliver treatments for Rett Syndrome in the UK. It enables us to contact the families of registered patients directly as and when the need arises re upcoming trials or for help in demonstrating unmet need in terms of medical and clinical provision in the UK. If you love or care for someone with Rett Syndrome, please register them today. It only takes minutes to register. The information submitted is completely confidential
Under the Data Protection Act 1998, Reverse Rett is committed to safeguarding the privacy of our service users whilst providing a personalised and valuable service.
The charity is registered with the Information Commissioner's Office and and adheres to the principles laid down under the Data Protection Act in processing personal data.
If, after reading this Data Protection and Personal Privacy Statement you choose to submit personal data, for example, by registering a person with a Rett Disorder, it is deemed that you are thereby giving your consent for that data to be held securely and processed in accordance with this statement and that you are giving your consent for us to contact you in accordance with our aims and objectives.
We will not release personal information we hold on you without your express written permission and we will not sell lists to a mailing company. Anonymised data might be used for the purposes of improving or facilitating improved clinical or medical provision for people with Rett Syndrome in the UK and beyond. If you have any requests regarding your personal information please contact us by post, phone or email.