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Here are some opportunities to take part in non-clinical research and PPIE (patient & public involvement and engagement) that involves surveys, questionnaires, interviews, discussions and workshops.
You do not need to speak to your specialist doctor about these opportunities but can read the information sheets supplied by the researchers and choose whether to get involved.
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Developing an app to detect RDEB cancer from photographs

Northwestern University (Chicago, USA) researchers are looking for people with RDEB and history of SCCs to contribute photographs of their skin lesions.
Take part
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Living well with a skin condition

The second stage of this study invites individuals with skin conditions to test the prototype of a new personalized psychological intervention called the “Living-well with a skin condition” program.
Take part
A person participates in a virtual meeting on a laptop, taking notes on paper while another person gestures and speaks on the screen.

Families with genetic diagnoses of EB

A one-hour online interview where you’ll be invited to share your personal experiences of having a diagnosis of EB personally or in your family.
Take part
A woman with long brown hair looks pensive, resting her chin on her hand while gazing out a window, her reflection visible in the glass—perhaps contemplating the results of a psychodermatology survey.

Psychodermatology & Me Survey

This short survey is for people in the UK with any skin condition and is supported by the British Skin Foundation and Skin Health Alliance.
Take part
Audience members sit in rows of seats, facing forward and watching something off-frame against a blue background.

Observe NICE meetings

Members of the public have the opportunity to observe the meetings of the National Institute of Health and Care Excellence (NICE) Advisory Committee.
Take part
A man in a blue shirt raises his hand in a meeting or classroom, with two other people seated behind him, one holding a tablet and the other a notebook.

Be Part of Research (NIHR)

The National Institute for Health and Care Research (NIHR) which makes it easy to find and take part in vital health and care research in England, Northern Ireland, Scotland and Wales.
Take part
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Genetic Counsellor Projects

Support genetic counsellor students who are passionate about EB and committed to advancing research in this area.
Take part
A person holds a large, unfolded hand fan with rainbow stripes, partially covering their face; trees and water are visible in the background.

LGBTQIA+ adults with visible differences (2025)

OUTCOMES - Researchers from the Centre for Appearance Research at UWE Bristol surveyed 75 LGBTQIA+ adults with visible differences and share their results here.
Outcomes of this research
A person with short hair has various colorful pills adhered to one side of their face, eyes closed, against a pale pink background.

Impact of medication (2025)

OUTCOMES - Catherine Silk has shared the results of her research on experiences of taking medication for EB with us in a blog post.
Outcomes of this research
A woman with long blonde hair lies on grass, surrounded by scattered red and white rose petals, looking up and smiling softly at the camera.

Look beyond the bias (2025)

OUTCOMES – Chiesi launched the results of their survey in October 2025
Outcomes of this research
Two women are sitting on chairs indoors, engaged in a conversation. One woman gestures with her hand while the other listens attentively.

Parent and sibling experiences of EB (2025)

OUTCOMES - A total of 14 people took part in this study: seven parents and seven siblings.
Outcomes of this research
Close-up of two people holding hands outdoors, one wearing an orange dress, the other wearing green pants, with a leafy background.

Loving ACTion (2025)

OUTCOMES - The Centre for Appearance Research (CAR) shares results from our latest joint efforts.
Outcomes of this research
A digital camera records a person sitting at a table, with the camera display showing their image in focus and the person blurred in the background.

Educate healthcare professionals (2025)

OUTCOMES - Fewer members submitted recordings than anticipated but the filming of one Patient Voices video to add to the British College of Dermatology website is planned.
Outcomes of this research
A person holding a clipboard and pen takes notes while another person sits across from them, appearing to speak, in a room with plants.

State of Caring survey and reports

OUTCOMES - The annual State of Caring survey helps the charity, Carers UK, understand carers’ needs and the challenges they face.
Outcomes of this research
A woman with red hair poses in profile between two white marble busts, her face aligned closely with the sculptures.

Rare Minds Matter (2023)

OUTCOMES - The ‘Rare Minds Matter – Mental Health Survey 2023’ report explores the post-pandemic mental health experiences of the UK’s rare community.
Outcomes of this research
A person in a light gray blazer and black shirt smiles while standing indoors against a bright, blurred background.

Exploring Black British women’s experience of skin conditions (2024)

OUTCOMES - The study underscores the need for racially literate healthcare, culturally competent communication, and improved visibility of Black skin within dermatological training and research.
Outcomes of this research
Two women sit on a couch in a room with plants, engaged in a conversation. One woman faces forward while the other has her back to the camera.

Family planning with a visible difference (2025)

OUTCOMES - The Centre for Appearance Research (CAR) shares results from our latest joint efforts.
Outcomes of this research
Logo with overlapping colorful handprints, a white teardrop shape in the center, and the text "RAREDISEASEDAY.ORG" below in pink capital letters.

RDD 2026 Survey

Genetic Alliance UK is exploring the theme of equity for people living with rare conditions as part of their RDD 2026 campaign.
Awaiting outcomes
A family of four crosses the street, with a woman holding a baby and man walking beside her with a young girl.

DEBRA Wellbeing Toolkit for EB Parents

In collaboration with DEBRA UK, Professor Andrew Thompson, Olivia Hughes and the team at Cardiff University have been working on a project to develop a psychological support ‘toolkit’ for parents of children with EB.
AWAITING OUTCOMES
Assorted medical items including syringes, mask, thermometer, gloves, stethoscope, pills, bandages, pill organizer, and anatomical models arranged on a blue background.

Medical devices and products survey (2025)

AWAITING OUTCOMES - The Department of Health and Social Care is carrying out work to reform ‘Part IX of the drug tariff’ where medical devices and products available for prescribing in primary and community care are listed.
AWAITING OUTCOMES
Five people place their hands together in a teamwork gesture over a wooden table with documents, a notebook, and an open laptop.

We R Rare steering group (2025)

CLOSED - Join the We R Rare Steering Group and help shape the future of care and research for rare conditions.
AWAITING OUTCOMES
A person holding and looking at a series of ultrasound images in a softly lit room with light-colored decor.

Wider family planning in EB (2025)

AWAITING OUTCOMES - Mia Keating is a Genetic Counselling student at the University of Cardiff. Thank you to all our members who took part, outcomes will be available soon.
AWAITING OUTCOMES
A classroom with students in uniform studying at desks; two boys in the front row are smiling and posing for the camera, while others are focused on their work. A mural of London is on the wall.

EB at school (2025)

AWAITING OUTCOMES - Helen Shepperson is a Genetic Counselling student at the University of Cardiff. Thank you to all our members who took part, outcomes will be available soon.
AWAITING OUTCOMES
A young woman with headphones around her neck holds a pink folder and smiles, standing indoors near wooden panels.

Patient Pairing (2024)

AWAITING OUTCOMES - The Beacon 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.
AWAITING OUTCOMES
Close-up of a hand gently resting on a bare shoulder against a neutral background.

Living well with a skin condition (2025)

AWAITING OUTCOMES - This study invites individuals with skin conditions to participate in a new personalized psychological intervention called the “Living-well with a skin Condition” program.
AWAITING OUTCOMES
Logo of DEBRA UK. The logo features blue butterfly icons and the organization's name. Underneath, the tagline reads "The Butterfly Skin Charity.
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