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. Exploring Black British women’s experiences of skin conditions and appearance adjustment Expand Researchers at Cardiff University would like to interview women who are at least 18 years old, live in the UK, self-identify as Black Caribbean/African or Mixed heritage and have a skin condition that they are willing to discuss. More information Participant information sheet and registration
03. Loving ACTion evaluation Expand Researchers at the Centre for Appearance (University of the West of England, Bristol) are looking for adults with visible differences to evaluate ‘Loving Action’, a 7-episode podcast series aiming to support adults with visible differences who are experiencing difficulties/concerns with aspects of their romantic life. You would receive a copy of ‘Loving Action’ and take part in a series of surveys about your experiences using it. Participant information sheet and registration
04. Exploring family planning and decision making for people with a visible difference which can be inherited Expand Complete an expression of interest form and you will be contacted by the Centre of Appearance Research to participate in a 1:1 60-minute online interview. The researchers aim to better understand what support and resources might be useful to help make these decisions. Find out more and take part
05. 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
06. The Beacon Patient Pairing Scheme 4th September – 30th October 2024 Expand The Student Voice Prize Patient Pairing Scheme gives medical, nursing and biology students, the chance to be paired with a rare disease patient or advocate to learn first-hand about their condition and patient experience. The student will arrange an interview of up to 1.5 hours with their patient pairing and use the insights gained during the conversation to inform and enhance the essay they submit to the Student Voice Prize competition. Find out more
07. 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
08. 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
09. RESULTS AVAILABLE Carers UK annual State of Caring survey Expand The annual State of Caring survey helps the charity, Carers UK, understand carers’ needs and the challenges they face. Please fill in the 2024 survey if you are a carer: State of Caring survey 2024 Thank you to everyone who completed the 2023 State of Caring survey. Read 2023 report
10. RESULTS AVAILABLE Rare Minds Matter: Mental Health Survey 2023 Expand Thank you to everyone who completed the 2023 survey. Results have been written up and published in a report. Read the Rareminds 2023 report Rareminds have launched their wellbeing hub bringing information and resources together to help people live as well as possible with rare conditions. Access the Rareminds wellbeing hub 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.
11. 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.
12. 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