Everyone who cares about a child or adult with Rett Syndrome knows all too well of the difficulties in obtaining the right supports and services for them.
But for families from minority backgrounds, there are additional implicit health inequities which compound an already very challenging situation for children and adults with rare diseases like Rett Syndrome and the families supporting them.
At Reverse Rett, we want to do everything we can to ensure that we are addressing these health inequalities in all areas of our work, whether that’s through the Rett Registry UK, access to clinical trials and the Reverse Rett funded CIPP Rett Centre, CIPP Rett monitoring, provision of health information and even just events we offer as an organisation. Our remit is to deliver treatments and a cure for Rett Syndrome to everyone affected and when we say everyone, we mean everyone.
As part of this work, in November 2021, Reverse Rett CEO Rachael Stevenson and Reverse Rett Ambassador and Research Review Committee member, Joanna Tomlin, attended the Breaking Down Barriers, ‘Understanding Health Inequalities’ event in partnership with the Department of Health.
Through the event, rare disease patient groups were able to share their experience of health inequalities and help develop learning to inform the Department of Health as they move forward in trying to address some of the health inequities children and adults with rare diseases who are from minority backgrounds still face.
Joanna, who is mum to Keisha, who is in her thirties, made a powerful contribution of her direct experiences of racism whilst advocating and caring for Keisha over the years and particularly whilst Keisha was receiving care in hospital.
Reverse Rett are now members of Breaking Down Barriers and we will be attending a further event later in January as well as doing some internal work with our team to ensure that our awareness of health inequity is threaded through each area we are working in.If you have experiences of health inequities as the family member or carer of someone with Rett from a minority background, please tell us about it by emailing firstname.lastname@example.org