The AKU Society has joined forces with US charity Partnership for Cures in order to develop and fund clinical trials into treatments for AKU.
Partnership for Cures drives the re-use of existing drugs for untreated conditions through a collaboration of philanthropists, disease specific charities, patient support groups, researchers, industry and media. It has set up a Patient Impact Initiative to identify promising clinical trials, assist in their development and raise funds to support them.
Partnership for Cures President and Chief Science Officer Dr Bruce Blume said: ‘Potential treatments already exist in the scientific literature and in clinical practice that can quickly, safely and economically impact patients. This rediscovery research, as we call it, impacts patients by reusing and reconfiguring already existing drugs, devices, treatment protocols and clinical anecdotes.’
A perfect example is Nitisinone, a drug used to treat Hereditary Tyrosinemia Type 1, a rare genetic disease. Research has shown that Nitisinone could also be used to treat AKU. The challenge is designing and funding a clinical trial to prove this.
AKU Society Chairman Dr Nicolas Sireau said: ‘We’re extremely pleased to be working with Partnership for Cures. We’ve already started designing a protocol for clinical trials with our partners at the Royal Liverpool University Hospital to develop treatments for AKU using existing drugs such as Nitisinone. Partnership for Cures will help us in particular with the fundraising over the coming 18 months.’
Partnership for Cures supports projects that focus on any disease, use any therapy and impact any group of patients in order to create better treatment options, improve early diagnosis and lengthen disease remission.
If you know of any philanthropists and/or foundations who are interested in funding clinical trials into treatments for AKU, the first genetic disease ever identified, please do introduce them to nick@akusociety.org and Bruce@4cures.org.
To find out more about Partnership for Cures, go to: https://www.4cures.org/home.
To donate to the AKU Society, go to: https://www.justgiving.com/alkaptonuria
To contact the AKU Society, please email nick@akusociety.org.

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