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Our Alliances

The following organisations work closely with Reverse Rett in a number of different ways. We are honoured and grateful for their help, support and trust.

If you are interested in finding out how your organisation might work with Reverse Rett then please contact rachael@reverserett.org.uk

RSRT

RSRT is the world's leading organisation devoted exclusively to promoting international research on Rett Syndrome, MECP2 Duplication Syndrome and related MECP2 disorders. Their goal is to heal children and adults who will otherwise struggle with the effects of this devastating condition for the rest of their lives.

In 2009, when UK families wanted to impact the speed at which families could be developed for their children, RSRT was the organisation of choice to work with.

RSRT is not a traditional grant-making organization passively waiting for proposals to be submitted. In sharp contrast, their unparalleled knowledge base and deep-rooted scientific connections put the organization in a unique position to identify, catalyze, evaluate, prioritize, support and monitor ambitious and novel research projects.

Reverse Rett now works in partnership with RSRT to fund the world's most innovative Rett Syndrome research. As one of the Co-Founders of the UK organisation, RSRT Executive Director, Monica Coenraads serves on the Reverse Rett Board of Trustees and Reverse Rett Co-Founder and Executive Director, Rachael Bloom also serves on the Board of the US based RSRT.

Please visit the RSRT website to find out more about the work of this unique organisation.

 

 

Rett UK

Rett UK are a national UK charity providing professional support to the families and carers of people with Rett Syndrome.

Rett UK supports families through a national helpline, including telephone, email and social media support. They organise local support groups and regional days and also provide training for people who are supporting someone with Rett syndrome whether that is in a school, college, day centre, supported living, respite or residential setting.

Reverse Rett work in collaboration with Rett UK to address the immediate needs of families of people with Rett Syndrome in the UK, as well as working together through the Rett Disorders Alliance of the UK on a broader scale, to shape a more positive future for people with Rett Syndrome in the UK.

Read more about the work of Rett UK here.

 

 

 

rett disorders alliance of the uk

The Rett Disorders Alliance of the UK was formed in late 2013 to enable UK Rett organisations to work more effectively alongside each other as well as together, collaborating where appropriate on shaping a more positive future for people with Rett Disorders in the UK.

The group consists of UK charities or official patient groups which have direct or indirect involvement with issues relating to the management of symptoms, treatments or general condition of people with Rett Disorders in the UK.

These organisations include Reverse Rett, Rett UK, FOXG1 UK, CDKL5 UK and Rett Education UK.

For more information about the Rett Disorders Alliance of the UK, please contact Chair, John Sharpe (Reverse Rett) or Secretary, Becky Jenner (Rett UK).

Israel Rett Syndrome Foundation

The Israel Rett Syndrome Foundation's vision is to support scientific research focused on the development of treatments and a cure for Rett Syndrome. They also promote the highest quality of life for girls with Rett Syndrome and their families.

They stand alongside Reverse Rett in their committment to funding the International research programme through RSRT.

For more information visit the Israel Rett Syndrome Foundation website

Rare Disease UK

Rare Disease UK is a national alliance for people with rare diseases and all who support them. They campaign for everyone living with a rare disease to be able to receive high quality services, treatment and support and work with disease specific patient groups like Reverse Rett to ensure progress in this area wherever possible.

Rare Disease UK is campaigning for Health Departments across the UK to implement the UK Strategy for Rare Diseases (published in November 2013) to ensure that patients and families living with these conditions have equitable access to effective services.


You can read the UK Strategy for Rare Diseases here.

Read more about Rare Disease UK here.

Genetic Alliance UK

Genetic Alliance UK is a national alliance of organisations with a membership of over 150 charities which support children, families and individuals affected by genetic disorders.

Genetic Alliance UK aim to improve the lives of people affected by genetic conditions by ensuring that high quality services and information are available to all who need them.

They actively campaign on issues of policy and practice to influence governments, policy makers, industry and care providers such as the National Health Service and provide a united voice for all those affected by genetic conditions, enabling us to work together towards a common goal of making life better for patients and families. All of these issues are vitally important to people with Rett Syndrome and their families.

Reverse Rett are members of Genetic Alliance UK and have endorsed the 2014 Genetic Alliance UK Highly Specialised Technologies Patient Charter, a document endorsed by 77 patient groups, highlighting the concerns that patients have about the new approach the Government and NICE are using to determine whether or not medicines for rare conditions are made available through the NHS.

As rare disease groups, it is critical that patient groups like Reverse Rett and others are able to come together to set out a united case for change. Genetic Alliance UK provide a forum for patient groups to do just that, providing information and guidance throughout the process.

Read more about the work of Genetic Alliance UK here.

 

Rett Syndrome Ireland

The Rett Syndrome Association of Ireland is an association of parents and families of people affected with Rett Syndrome.

They provide support and information to families who have received a new diagnosis. They aim to raise awareness among medical and other professionals who work with people affected by Rett Syndrome, as well as public awareness of the condition, and to encourage and assist Research.

For more information please visit the Rett Syndrome Ireland website

Eurodis

Eurodis is a non-governmental patient-driven alliance of patient organisations representing 561 rare disease patient organisations in 51 countries.

They are the voice of 30 million people affected by rare diseases throughout Europe. Eurodis' mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level.  

Reverse Rett is proud to be a member of Eurordis.

To find out more please visit the Eurodis website here

Guðrún’s Rett Syndrome Research Trust

Guðrún’s Rett Syndrome Research Trust was founded by Bryndís and Friðrik, parents of Guðrún Sædal Friðriksdóttir on May 13th 2012.

The objective of the Trust is to raise funds to support research and to raise awareness of Rett Syndrome in Iceland and to support Guðrún. Reverse Rett enjoy a close relationship with Gudrun´s Rett Syndrome Research Trust and they have raised a significant amount of money which they have donated to us to help speed treatments for Rett Syndrome for children throughout Europe and beyond.

If you would like to know more about Rett Syndrome in Iceland, establish a contact with the families, doctors or other professionals who have treated girls with Rett Syndrome, please email ffridriksson@gmail.com

To find out more please visit their website here

Rett Syndrome
Research Trust

Rett Disorders
Alliance UK

Rett Syndrome
Ireland

Eurodis
Rareconnect

Israel
Rett Syndrome Foundation

Guðrún's Research
Trust Iceland

Genetic Alliance
UK

Rare Disease
UK

Rett
UK