VTCT Foundation London Showcase 16 July 2025
Over 30 Appearance Collective members and grant recipients came together in Kings Cross on Wednesday 16 July for VTCT Foundation’s annual London Showcase event.
As the Foundation moves into its final phase, this year’s event provided a valuable forum for attendees to explore the four central themes that have emerged through the VTCTF Legacy Project research process. Setting the tone for the day, Chair Tony Lau Walker emphasised the importance of collaborative discussion around each of the themes to ensure the legacy is directed where members need it most and will make the most meaningful difference.
This message was echoed by Grant Manager Lizzie Chambers plus Trustees Rosanna Preston and Professor Nicky Rumsey who explained how the day’s programme reflected priorities identified by the Board from its 21 conversations with Appearance Collective members between September 2024 and January 2025.
“I love the buzz at our annual events, as it shows the value of bringing like-minded people with a shared interest together. No matter how they think, or how varied their backgrounds and experience, it’s a good opportunity to talk and exchange ideas.”
Tony Lau Walker, Chair of Trustees, VTCT Foundation
THEME 1: Information / education hubs: what is needed?
“Whilst professionals come across some conditions regularly, there are other rarer ones that they don’t know enough about to manage their patients appropriately. Having a go-to central hub that healthcare workers could quickly access would reduce treatment delays.”
Professor Nicky Rumsey, Trustee, VTCT Foundation
Professor Diana Harcourt from the Centre for Appearance Research (CAR) was the first speaker to discuss the benefits – and challenges – of centralising information. Introducing CAR’s new Visible Difference Support Hub, which had launched that morning, Diana explained how it had been designed to make it easier to access the evidence-based research and support resources developed by their team over the years.
Crucially, the hub’s format was guided by feedback from an advisory group of 12 Appearance Collective charities. This team effort informed all aspects of the website, from defining its authoritative yet approachable tone to ensuring the site hosts a wide range of resources in differing formats, including translated materials. With CAR able to continue adding future completed materials to the hub, and the Appearance Collective network also signposting the resources, they hope the site will help people challenge negative attitudes and stigmas towards visible difference.
Luke Langlands, Co-CEO of The Tuberous Sclerosis Association (TSA) then described the process behind the creation of their upcoming online tool for medical professionals.
As the only UK-wide charity dedicated to representing the Tuberous Sclerosis Complex (TSC) community, the team recognised how a lack of specialised information was adversely impacting people with the rare TSC genetic condition. And, with its impact varying greatly between patients, this knowledge gap led to bottlenecks in the system, from referral delays to problems accessing medication.
Luke summarised how they are developing a dedicated online training platform to combat the barriers created by a lack of clinical knowledge. Due to launch next spring, it will delve deeper than the TSA’s previous self-led training to cover the physical as well as mental support required. The CPD-accredited course will incorporate a mix of content – audio, video and text – to suit all learning styles, whilst its modular design will make it easy for time-pressed GPs to dip in and out and quickly access the specific information relevant to support their patients.
With two sides to Changing Faces – practical support and awareness-raising – Head of Services, Sam Cheatle, told delegates how the charity’s quest to increase its reach led them to create an online learning platform.
For the organisation to achieve its goal of ensuring everyone in the UK with a visible difference can access the support they need, it needs to be able to identify gaps. In 2024 it therefore surveyed current interventions to determine where their efforts could make the biggest difference. Acknowledging the value of collaborating with like-minded groups, it was important any solution complemented existing sector programmes.
With the first of their three-year project’s five phases – the feasibility stage – completed, Sam outlined the three engagement levels proposed for their new platform. Based on the accessible Massive Open Online Community (MOOC) concept, these comprise interactive tool-based exercises that expand on their current self-help guides, peer-to-peer support via a discussion thread, and ‘live’ group sessions co-hosted by Appearance Collective partners.
The charity will now develop the platform in a way that allows users from diverse communities to access the specialist support that best suits their needs.
“Advocacy can be very lonely and overwhelming. For a while we failed to recognise that the isolation experienced by people with facial differences is also mirrored in the organisations serving them. We therefore want to reduce silos by sharing resources.”
Phyllida Swift, CEO, Changing Faces
The last morning presentation came from Face Equality International, with CEO Phyllida Swift joined by the charity’s Campaigns Manager Chloe Walters to talk through the Alliance’s new vision and ‘empower and equip’ strategy.
While measuring change is difficult, Phyllida stressed how important it is to consider the human impact behind each activity. This clear picture of what people gain from engaging with your work helps identify gaps that impact the wider sector so you can focus on what support will be most valuable to them.
Walking the audience through the pros and cons of their four-year old education hub, Chloe explained it had been designed as a collaborative space that could be refined to create a living, breathing educational programme. Having external and internal experts lead sessions particularly helps bring their empower and equip model to life.
As the team evaluates, adapts and improves its current offerings, one key reflection was the importance of making time and space for condition-specific discussions. Not only were their monthly meetings a great way to trial activities, but these regular interactions proved a useful opportunity to signpost people to resources and capture feedback.
“While all charities struggle to get their resources as good as possible, each one knows its community and conditions best. An upskilling process around the types of resources that work best could help them to optimise their care.”
Professor Nicky Rumsey, Trustee, VTCT Foundation
THEME #2: Addressing EDI and increasing reach
After lunch, Dr Nicola Stock, Associate Professor of Psychology at CAR, introduced her academic work to advance psychological support for people from ethnic and culturally diverse backgrounds.
From interviews with 16 charities to understand what was being done and the barriers they had come across, most seemed to be in the early EDI stages. Whilst conscious of their own ‘unknowing’, her research revealed they often found EDI training expensive and only scratched the surface of what organisations particularly needed to know.
Given the challenge of representing diverse experiences on websites, she recommended several ways organisations of all sizes could build trust with their community to position themselves as knowledgeable and approachable. These included increasing cultural competency by identifying assumptions and biases and working on effective communication skills, engaging in research to identify support needs, creating diverse resources that increase representation, developing guidelines to make EDI a priority throughout an organisation, and embracing technology to both increase accessibility and demonstrate impact.
“What’s clear is that if people can see themselves represented on sites they are more likely to think it a place they can go for support. And if they feel you understand their culture, you are more likely to get their stories and have more diverse experiences to share.”
Dr Nicola Stock, Associate Professor of Psychology, CAR
Katrina Phillips, CEO of the Child Accident Prevention Trust, then illustrated how they had targeted vulnerable, hard-to-reach families, and the community groups that support them, in Manchester.
With 45% of the city’s children living in poverty, their 16-month project focused on an area with the highest rate of serious burns, where children are three times more likely to be admitted to hospital with avoidable injuries.
Katrina described how they forged links and helped run focus groups with over 250 small community groups to fine-tune their activities. These ranged from food pantries to faith groups, with many off the Public Health team’s radar despite providing essential aid to some of the city’s most disadvantaged families.
Through these relationships the charity discovered how the families often lacked mother tongue literacy. Despite over 200 languages being spoken across the city, this insight prompted them to pivot away from translating materials and instead commission illustrations that – though more expensive – would communicate the risks and safety advice more effectively.
“It can take a long time to develop relationships with hard-to-reach groups. But you need to put extra energy into reaching them, even if this a laboured process.”
Katrina Phillips, CEO, Child Accident Prevention Trust
THEME #3: Advocacy and awareness raising
Having heard about the service side of Changing Faces earlier, Andrew Smart, Head of Communications, Campaigns & Digital, shifted delegates’ attention to the charity’s second focus.
Faced with a lack of media representation that left people with a visible difference feeling ignored by brands, the charity launched its deliberately provocative ‘Face for Radio’ campaign in February 2025. Working with a creative agency and campaigners, they set out to encourage an industry shift via strategic billboards, PR and social media. Changing Faces also hoped to encourage British brands to sign a pledge committing to challenge social stigmas through greater representation.
Whilst the campaign succeeded in driving the public debate, things didn’t always go to plan and the corporate pledge dimension proved tougher. Despite the lack of high-profile signatories, the process still helped them start beneficial conversations across the industry and their learnings will feed into future campaigns.
“1 in 5 people in the UK self-identify as having a visible difference, but you wouldn’t think that if you looked at marketing or watched TV. There is a shortage of positive role models in the media.”
Andrew Smart, Head of Communications, Campaigns & Digital, Changing Faces
THEME #4: Family support & events
As the Ectodermal Dysplasia (ED) Society prepared to host the syndrome’s next International Conference in Birmingham, they recognised the limited opportunities for families and professionals dealing with the rare genetic condition to connect. To create a welcoming forum for both sides to exchange knowledge and experience while deepening their understanding, Diana Perry, CEO and Founder of the charity, explained how they introduced a dedicated Family Day within the triennial event’s programme.
From interactive Q&A sessions to chances to build meaningful friendships and combat isolation, the agenda allowed medical professionals to share their research across the first two days before being encouraged to join affected individuals and parents on day three. With around 80 daily attendees, this format gave families direct access to expert knowledge, while offering professionals the opportunity to gain valuable insights from people’s lived experiences and broaden their awareness of other ED-related fields.
“For some families, our event was the first time they had met others with ectodermal dysplasia. They told us they felt heard, supported, better informed, more empowered and less alone.”
Diana Perry, CEO & Founder, Ectodermal Dysplasia Society
The final presentation came from Tony Bloomfield, Operations Director at BLESMA, who shared how their storytelling and wellbeing programme helped limbless veterans reframe their experiences. Joined by Alice Knight-Driver from The Drive Project – the training organisation that delivered the workshops – they outlined the charity’s history of using the therapeutic power of stories for recovery.
Recognising how a more inclusive approach could encourage further veterans and families to open up in a psychologically-safe environment, the new group sessions allowed for more individual expression. With storytelling still at its heart, the creative programme encouraged participants to process emotions and share their experiences using different art forms, including sculpture, music and comedy.
Held in person and online to make them as accessible as possible, they ranged from two-hour workshops to multi-day residential courses. Since autumn 2023, the transformative project has supported 118 members across 56 workshops, helping them explore techniques that they can continue using in their daily lives.
After a productive day punctuated by constructive conversations, VTCTF trustees wrapped up the Showcase with a lively group discussion on the challenges and ideas raised – feedback that will be invaluable as the Foundation develops its strategy to leave a lasting legacy.