01. Guide researchers to create a useful project on ‘person-centred wound care' Expand Adults (18+) living with any type of EB or adult family members of children living with EB, are invited to discuss their experiences of nurses treating a wound that has lasted more than four weeks in online workshops via Zoom. Personal experiences will help the researchers to develop a better project to understand the values and behaviours that are important when nurses are providing care. An online workshop at the end of 2023 will provide feedback and invite participants to shape the questions for a research project planned by King’s College London and John Hopkin’s University (USA). Register your interest
02. Rare Minds Matter: Mental Health Survey 2023 Expand Rareminds are a not-for-profit Community Interest Company providing affordable, timely access to highly specialised counselling and wellbeing resources for people living with rare conditions. They would like anyone impacted by rare diseases (people with a rare condition, carers, family members and patient/support group leaders) to take 5-10min to complete this survey. Take the survey
03. Development of an app to detect RDEB SSC from photographs Expand Northwestern University (Chicago, USA) researchers are looking for people with RDEB and history of SCCs to contribute photographs of their skin lesions. The aim is to create a web application for patients with RDEB to upload images of their skin and get an output as to SSC present/no SCC. Find out more
04. Observe the meetings of the National Institute of Health and Care Excellence (NICE) Advisory Committee Expand Members of the public can see how decisions are made about which treatments are funded on the NHS. We will let members know whenever these committee meetings are taking place for potential EB treatments. Find out more
05. Be Part of Research Expand The National Institute for Health and Care Research (NIHR) provides a search tool to find out about health and social care research taking place in England, Northern Ireland, Scotland and Wales and/or you can register to be informed when opportunities arise. Find out more
06. NOW CLOSED Help gather evidence about caring Expand The State of Caring survey helps the charity, Carers UK, understand carers’ needs and the challenges they face. With a General Election in Westminster on the horizon, knowing the issues carers face in 2023 couldn’t come at a more important time. Please share this survey with your contacts locally, and fill it in if you are a carer yourself.
07. NOW CLOSED Help researchers better understand the impact of DEB Expand Help researchers at the University of York better understand the impact of DEB by completing a 10min questionnaire. People with DEB aged 13 years and above may complete the survey by themselves but a parent/caregiver should complete the survey on behalf of children with DEB aged 12 years and below. The survey will include graphic images of wounds and ask you to describe the impact these would have on yourself or your child. This study is sponsored by a gene therapy company that develops and commercialises treatment for dermatological diseases and your answers will be used anonymously to make funding decisions. The results may be fed back via publication in academic journals, presentation at scientific conferences and/or in a case study on the York University website.