01. Parent and Sibling Experiences of EB - interviews Expand By sharing your experience as a parent or brother/sister to someone with EB, you can help us learn more about how EB affects you and your family. Having a better understanding of your experience can give us ideas about what might be helpful for people with EB and their families both from other people and services. Read more about this opportunity to get involved. Email the researcher to 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.
08. NOW CLOSED Share your experiences: before, during and after genetic/genomic testing Expand People living with EB and their families are invited to complete a survey that will take no more than 10 minutes. The NHS England National Genomics Education programme is committed to using patient voice to shape educational resources for healthcare professionals. This survey can be completed until 31 January 2024. Take the survey