I Am Number 17 campaign highlights urgent unmet need in rare diseases with call for government action

• 40% found that they didn’t know where to start when trying to get a diagnosis for their symptoms.1
• 57% had to see at least three doctors or specialists, in some cases up to ten, before finding the cause of their pain and discomfort.1
• 54% said the emotional toll of being affected by a rare disease has led to serious mental health struggles.1
• 39% experienced financial challenges and debt related to seeking a diagnosis and managing symptoms.1

Rare diseases, which affect 1 in 17 people in the UK (over 3.5 million people) 2,3, are often invisible to the outside world and profoundly impact individuals and families, creating emotional, financial and logistical challenges.1 The survey showed that 92% of respondents experienced lifestyle changes related to their rare disease, including 29% who reported family caregiving responsibilities interfering with work, nursery, or school on a weekly basis and a third of respondents having to reduce work hours or stop working entirely.1

Rachel Botterill, a Crawley resident living with a rare disease has represented the West Sussex community by personally delivering an open letter to Parliament. This powerful action is part of the I am number 17 campaign, initiated and funded by Takeda UK, which today launches new research to raise vital awareness for the 1 in 17 people in the UK affected by a rare disease.

Rachel’s personal journey with Ehlers-Danlos syndrome highlights the often-invisible struggles faced by individuals and families navigating rare conditions.The new research released today highlights the significant struggles faced by those living with a rare disease. As part of the I am number 17 campaign, Rachel aims to increase public and healthcare professional awareness of rare diseases, addressing the low understanding that often leads to misdiagnosis and care inequity.

The Fridge Diaries

The I am number 17 campaign features a new campaign film –Fridge Diaries – which is a visual representation of the hidden reality of living with a rare disease. From postcards and holiday fridge magnets to kid’s drawings and invitations to school plays, the fridge is the place that highlights cherished moments and future joys. For those affected by rare diseases, these everyday moments are often replaced by reminders of struggles and the long journey to diagnosis. Fridge Diaries represents this reality, showcasing how everyday joys can be overshadowed by medical appointments, misdiagnoses and the constant search for answers.