Rett UK does not work in isolation and is always keen to explore working in partnership with other people interested in Rett syndrome both in the UK and internationally. This extends to working with others in in the field of genetics and rare disorders where the numbers of patients affected are relatively small and more progress can be made by being part of a larger group.
Rett UK has an alliance with Reverse Rett; you can read more about it here Reverse Rett Rett UK This was an important step to bring clarity to the Rett community about the difference between the charities but it also provides a collaborative platform from which we can deliver the best outcomes for families affected by Rett syndrome in the UK.
Following on from this, The Rett Disorders Alliance was formed with other Rett related disorders including; MECP2, CDKL5 UK, and FOXG1 (please note the link for FOXG1 is to the American Foundation as not a formal charity established in the UK yet.) Some of the things we are currently discussing are what shape a registry for Rett syndrome in the UK will take and identifying opportunities for lobbying to raise the political and medical awareness of Rett Disorders.
On 10th March 2016 The Rett Disorders Alliance was delighted to host the first meeting of the Rett Disorders UK Working Group in London. You can read a summary of the work Rett Disorders UK Working Group here and see who attended. The next meeting is in December 2017.
Internationally, we are part of Rett Syndrome Europe (RSE), in fact our President, Yvonne Milne, was one of the founding partners in RSE in 1993.
Rett Syndrome Europe Aims
- To make Rett syndrome better known to the public, professionals, carers and those who are directly concerned in all European countries
- To improve communication within the European Rett community
- To promote, as a representative European organisation, the interests of people with Rett syndrome and their families
- To expand RSE to all European countries and to assist, if necessary, in the creation of national associations
- To promote research into Rett syndrome
We are also members of Genetic Alliance UK, Rare Revolution Magazine, The NCVO and The Helpline Partnership and are affiliated to Carers UK.
Other helpful organisations
Tree of Hope
“Tree of Hope children’s charity helps children and young people with a disability or illness by supporting their families to raise the funds that they need to pay for specialist care that is not freely available through the NHS. Children with healthcare needs can often benefit from a range of therapies and treatments, not necessarily available via state provision. Tree of Hope supports families to fundraise towards these costs, safe in the knowledge they are working with a registered charity to maximise their fundraising opportunities and get support and help from us every step of the way. Donors will be reassured they are donating to a registered charity and their money will be used for what it was originally donated for, to benefit your child.”
