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What is rare in rare? #1 Menkes International Association
In honour of Rare Disease Day 2026, we have invited our partner patient organisations , representing a diverse range of rare metabolic conditions, to share their unique perspectives and reflections using three words in response to the thought-provoking question “What is rare in rare?”
The response from Menkes International Association (MIa) Fairness. Treatment. Certainty.
Timely diagnosis and personalised treatment can greatly enhance the quality of life for patients with rare metabolic disorders. However, there are still limited treatment options available for most rare diseases. Patients and their families encounter many challenges in their daily lives, often facing a lack of fairness and certainty.
