News
Unlocking the Powerhouse of the Cell: MRC MBU Brings Mitochondria to Life at RAREfest24
Prepare to have your minds energised and curiosity sparked at this year’s RAREfest24. The Medical Research Council—Mitochondrial Biology Unit (MRC MBU) from the University of Cambridge will take you on a journey into the heart of your cells with innovative games,...
The Power of Collaboration: Beyond Blood
A Budding Entrepreneur, an Engaged Rare Disease Community, and a Transformative New Device. Have you or someone you care for with a rare condition needed blood tests recently? Now, imagine a world where checking your health is as simple as making a cup of tea—no...
Science as Solace: Daval’s Cosmic Quest and Life with a Rare Condition
Imagine a night sky brimming with stars, each a potential host to planets beyond our solar system. They are mysterious, diverse, and endlessly fascinating. They remind us that the universe is vast, filled with countless possibilities and unknown wonders. For Daval, a...
The Unyielding Laughter of Phil Jerky: A Rare Comedian’s Journey through Life, Laughter, and Adversity
Few can rival Phil Jerky's raw authenticity and unfiltered brilliance. Jerky makes audiences laugh with his unique blend of sharp social commentary, self-deprecating humour, and an unshakable ability to find light in the darkest situations. But behind the curtain of...
Introducing the New Rare Diseases Students’ Society at Cambridge University!
In September 2023, with the support of a dedicated team, I founded the Cambridge University Rare Disease Society (CamRDS). This new student society aims to raise awareness about rare diseases, particularly among medical students, while fostering a supportive community...
The need for a rare patient passport
Launching CamRARE's 'The Need for a RARE Patient Passport' Report for Rare Disease Day Today, we've joined our community in celebrating Rare Disease Day and sharing the progress that is being made to improve outcomes for people affected. Today seemed the perfect day...
Newborn Screening- A Primer with Dr Lucy McKay, CEO of Medics4RareDiseases
What is Newborn Screening? Who is screened, and for which conditions? What is screening's role in the wider provision of care for rare diseases? Among a panel of people with different expertise, Lucy will facilitate a diversely informed discussion centring around the...
Joe Clymer – Supplementing The Medical School Curriculum One Rare Disease at a Time
Joe Clymer is a 5th-year medical student. Over the summer of 2023, he completed a 75-hour internship with the Cambridge Rare Disease Network. This internship aimed to identify common problems that families with rare diseases face and create a set of resources to help....
Cell and Gene Therapies Transform the Rare Disease Horizon – Are We Ready to Deliver Advanced Therapies? The Perspective of Sheela Upadhyaya, a Rare Disease Consultant
Cell and gene therapies transform the rare disease horizon. They hold the power to transform patient's lives. Are we ready to deliver Advanced Therapies? Sheela Upadhyaya is an independent rare disease consultant who has eighteen years of experience in the rare...
Learning from the Rare Disease Community: Enhancing Facial Recognition AI Technologies for Improved Accuracy in Identifying Individuals with Facial Deformities
Facial recognition technology has made significant advancements in recent years, transforming various industries and enabling efficient identification and authentication processes. However, one area where these technologies often fall short is accurately recognising...
I Am One Of You! Overcoming Obstacles: The Journey of a Young DeafBlind Rare Disease Disabled Scientist in the STEM Industry
Can you imagine being a young, ambitious, deafblind scientist with a small handful of rare diseases and being passionate about disability advocacy, determined to make your mark in the competitive world of Science, Technology, Engineering, and Mathematics (STEM)? Then,...
Embracing Resilience – The Journey of an Asian Male Living with Neurofibromatosis Type 1 and Facial Deformities
Life's challenges come in many forms, and for some, the journey is exceptionally arduous. For Amit, an Asian male born with Neurofibromatosis Type 1 (NF1) and facial deformities, navigating childhood, adolescence, and adulthood was and is an emotional rollercoaster....