CamRARE Blog 1
My Story My Way. Embracing all ‘Voices’: Inclusive Advocacy for Young People with Different Communication Styles Living with Rare Diseases
CamRARE supports families affected by rare diseases (RD) through our 'Unique Feet' (UF) community group, where children, young people, young adults, and their families feel connected, understood, and supported. We provide local, accessible, inclusive activities and services to meet their needs.
Since Unique Feet's launch, we’ve been a huge part of our young persons’ journey as they transition through their teenage years, and we want to support them now to have positive and meaningful adult lives. How do we uncover their transition experiences and co-produce interventions to smooth their journey to adulthood? Do we know the impact transition has on their siblings?
Challenges in Communicating Rare Disease Voices
We recognise that young people with rare diseases who communicate differently or have intellectual disabilities face barriers when traditional communication methods, such as spoken language, hinder their ability to articulate their needs and challenges effectively.
To tackle this holistically, we Had a Huddle.
We gathered a team of experts on 31st July, with whom we have collaborated to develop creative techniques to help access, reveal and represent the social worlds of young people like ours and their families.
Meet our experts:
Graham lives in Scotland and is a ‘Documentary Photographer’; he loves to tell stories and will provide a little guidance and inspire our families to tell their stories.
Anna Todd, a journalist by trade, previously worked in TV, radio and online. She's currently a communications and engagement manager for the Cambridge Children's Hospital project. Anna is passionate about supporting children, young people, and families to share their stories. Her greatest joy is making content for charities; she has loved working with CamRARE.
Katie is a young person living with a rare disease. She is passionate about helping other young people with rare diseases and ensuring that their point of view is always considered. She also loves creativity, so she has many ideas to help tell those stories!
Framing the project
To hear these voices, we agreed that we needed to create an inclusive expression framework tailored to accommodate various learning styles and cognitive abilities. This framework means we can employ accessible formats to empower our young people to share their experiences and insights. We've also created a dedicated WhatsApp group for the families, and we’re building a detailed project plan to keep us on schedule.
‘Take a Trip.’
We’re now preparing all the materials to support our day trip (Take a Trip) with our older UF young people. Anna is collating a montage of our group in film to celebrate their growth and journey as a community. We’ve also completed our summer photography fun project, where our group took photos of what makes them happy, what they are proud of, and what they like.
We’ve secretly asked families to send us one of their favourite photos of their child participating in an activity. We’ll show this film on 1st October when we have our day out at Shepreth Wildlife Park.