Tell Your Story
Share your rare disease journey
Your experience can help improve understanding of rare disease diagnosis. By sharing your journey, you can help us understand what happened before, during and after diagnosis, including the symptoms you experienced, the healthcare professionals you saw and the investigations you had.
Your experience will contribute to research aimed at identifying opportunities for earlier diagnosis and improving the journey for others living with rare diseases.
Tell Your Story
Share your diagnostic journey
Your experience navigating a rare disease diagnosis is valuable. Our guided survey captures the moments that matter, from first symptoms to confirmed diagnosis, so your journey can inform research and help others find answers sooner.