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Saturday 26th Nov

10:00 UNTIL 16:00

Cambridge Rare Disease Network - RAREfest22 | Films 1

Talks, monologues, panel discussions, film, music

Kyowa Kirin Shine a Light on XLH film

Shine a Light on XLH (X-linked

by Kyowa Kirin

Kyowa Kirin are shining a light on X-linked Hypophosphataemia (XLH) to raise awareness of the impact that XLH can have on all aspects of peoples’ lives and to highlight the role phosphorus plays in the disease. 11 people living with XLH underwent a stunning digital makeup ransformation with the support of an award-winning creative team. The people who took part in the campaign now have their portraits and stories displayed within a virtual exhibition
which launched on 16 May, 2022.
Creating I:DNA film

Creating I:DNA

by Dr Corinna Clark & Prof Felicity Boardman, University of Warwick

In September 2019, an innovative new touring art installation, I:DNA, was launched. It was designed to shine a spotlight on the lived experiences of people affected by genetically inherited conditions, and their perspectives on population genetic screening. I:DNA was inspired by research into people and families living with Cystic Fibrosis, Spinal Muscular Atrophy, Thalassaemia, Fragile X Syndrome, and Haemophilia.

Alexion film image

Reforming Rare Diseases: Making the Rare Path the Right One

by Alexion AstraZeneca Rare Disease

This video is focused on championing equity for people living with a rare disease by highlighting the urgent reforms needed to improve patient care for the rare disease community. Created in consultation with Genetic Alliance UK, Beacon, Medics 4 Rare Diseases, and Rare Revolution, the video is based on the findings of a patient/caregiver survey on the standard of care for people with a rare disease in the UK, led by Genetic Alliance UK and supported by Alexion.
Cambridge Rare Disease Network - RAREfest22 | Films 2

Tristan’s Rare Disease Day, Every Day

by Cambridge Rare Disease Network

Tristan is 10 years old. For Rare Disease Day 2021, he shares a glimpse into his day to day of living with a rare condition. For Tristan, it’s rare disease day, every day.​ Tristan and his family are very special members of Cambridge Rare Disease Network’s fabulous #UniqueFeet​ group of children and their families affected by rare conditions and they love to get involved in all of our activities.
David Ross Rare Men Talking Mental Health Film

Beyond Limits: Rare Men Talking Mental Health

by David Ross

Rare disease patient and mental health advocate David Ross is proud to release his new film, “Beyond Limits: Rare Men Talking Mental Health.” Rare Patient Voice LLC, a leading firm connecting patients and family caregivers to opportunities for sharing their voices, has teamed up with David to address the often-overlooked topic of the mental health of men whose lives are impacted by rare disease.