What is rare in rare? #6 The Lily Foundation
Timely diagnosis and personalised treatment can improve the quality of life for patients with rare metabolic disorders. However, the average time to reach a diagnosis is 4–5 years, and in many cases, it often takes longer. In addition to that, following a rare disease diagnosis, patients and families often feel overwhelmed, isolated, and alone. They navigate a whole new language and a future very different from the one they expected, often without clear answers about prognosis or treatment options.
In that moment, what is often rare is certainty, control, and treatments.
These 3 words reflect the answer of our partner patient organisation, The Lily Foundation, to the question “What is rare in rare?”.
At the same time, the rare disease community and patient organisations consistently demonstrate three defining qualities – innovation, hope and resilience – which underpin progress in research, strengthen collaboration across stakeholders, and contribute to building a more supportive and responsive ecosystem for people living with rare diseases.
