Welcome to Women in RARE: Next Gen. Here, we shine a spotlight on female rare disease advocates of the future. First featured in the Women in RARE edition of RARE Revolution Magazine
About you
Katie Callaghan is a 22-year-old founder and patient advocate. Living with multiple rare diseases herself, she knows first-hand the difficulties that come with living with rare disease as a young person.
At the age of 13, Katie founded Cards for Bravery, drawing from her own experience of a lengthy hospital stay. Cards for Bravery is dedicated to brightening the days of hospitalised and chronically ill children and young people through handmade cards and other services such as activity packs and bravery packages. Today, Cards for Bravery is a registered charity, working with over 25 hospitals across the UK and having distributed over 25,000 handmade cards.
Katie’s passion extends beyond the charity as she actively advocates for patients in the rare disease space, ensuring their voices, especially young people’s, are heard. She has a particular interest in healthcare transition, collaborating with various charities and organisations to drive positive change.
Your biggest motivation
One of the biggest driving forces behind my dedication to running Cards for Bravery is the immense joy it brings to the children and their families. When I receive feedback, particularly in the form of pictures and videos, and witness the excitement and smiles on their faces as they open the cards and presents, it reaffirms that what I’m doing is truly meaningful and impactful. Seeing the positive difference I can make in their lives is incredibly rewarding and fuels my passion to continue making a difference.
Your greatest achievement
This is a difficult one as I could have so many answers! I believe my greatest achievements so far include being recognised on a national level as a shortlisted charity for the National Diversity Awards, which was incredibly rewarding. Registering the charity was also a significant milestone, as it symbolises how far I’ve come since starting this project from my hospital bed. Lastly, being honoured with a British Citizen Award in the New Year’s ‘People’s Honours’ list was a tremendous achievement and a testament to the dedication I have for making a positive change in the lives of others.
What’s next to strive for?
I’m always striving to bring joy to as many hospitalised and chronically ill children as possible. The more children we can help, the better! This year, we are actively working on expanding Cards for Bravery, with the hope of partnering with new hospitals and expanding our services. We are hoping to work towards improving mental health support and resources for these children we support.
Additionally, I’m determined to make a significant impact on transition in healthcare, and this year I’m excited to start striving even more for the much-needed changes.
Advice to other up-and-coming advocates
Don’t let fear hold you back from using your voice. It might feel scary at first, but sharing your experiences is key to creating real change. Young people are often underestimated and not listened to—and we need to change this!
The tide will have turned for the rare disease community when…
We see increased awareness and understanding and improved access to treatments and support. It will be a time when those affected by rare diseases feel seen, heard and supported; and when research and funding are prioritised to find better support and solutions.
Socials
Instagram: @katieds_ @cardsforbravery
Facebook: Cards for Bravery
LinkedIn: Cards for Bravery
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