Tackling health inequity for patients with Rett Syndrome


‘Reverse Rett recognises the inequities that people from minority backgrounds can face; through working and partnering with individuals and organisations, we hope to provide an equitable environment for all people affected by Rett Syndrome.’ 

Reverse Rett Trustee, Mo Lishomwa 

Reverse Rett works to deliver treatments and a cure to everyone affected.

We’ve realised though, that we aren’t reaching everyone. Whilst Rett Syndrome affects children and adults of all cultural backgrounds and ethnicities, through a recent survey of the Rett Registry UK, we found that the number of patients registered from minority backgrounds is not reflective of the UK general population. 

If patients are not registered, we can’t be sure we are reaching them with practical and potentially life-saving health information, information about accessing the CIPP Rett Centre, including digital monitoring and current UK wide clinical trial opportunities.

We need to change this. 

We’ve started by building an Inclusion and Diversity Focus Group at Board level and begun to reach out to community partners focused on health equity. 

Reverse Rett has also recently joined ‘Breaking Down Barriers.’ Formed by the Alstrom Syndrome Foundation, this network was formed to ensure that people from diverse communities with genetic conditions have the same access to support, services and treatment as everyone else.

We acknowledge though, that ensuring our work is inclusive is not about having a diversity project off to the side that we come back to on a regular basis. It’s more all-encompassing than that. 

We need to weave inclusion into everything we do; ensuring that everyone with Rett Syndrome in the UK has access to everything Reverse Rett has to offer. 

Active outreach to underrepresented communities must be embedded first and foremost in all of our programs; in Rett Registry UK recruitment, in the clinical research and care, we fund through the CIPP Rett Centre, in our disease-specific awareness campaigns and through our advocacy in driving treatments for Rett Syndrome forward. 

Reverse Rett Co-Founder and Trustee, Rita Ross says,

“Having worked in Diversity and Inclusion for many years, I know the importance of reaching everyone no matter what your background is. Having come from an Italian immigrant family I also understand the different views that come from different cultural backgrounds. This is why I believe it is so important to connect and encourage anyone affected with Rett Syndrome to join us to ensure you get the access to support and treatments that are available.