Healthcare agency Tudor Reilly has agreed to provide £10,000 worth of consultancy support pro bono to the patient group Alkaptonuria (AKU) Society.
The agency’s support will assist the patient group as it works towards ensuring that the drug nitisinone is tested in a Phase III trial.
The genetic enzyme deficiency disease can lead to the breakdown of cartilage, which becomes black and brittle and typically results in joint pain and the early-onset of osteoarthritis.
“As a strategic healthcare communication specialist, we understand the enormous achievements of the AKU Society in developing advocacy, fundraising and formulating a ground-breaking strategy in order to find a cure,” said Julie Walters, managing director of Tudor Reilly.
“We are proud to support Nick Sireau and his team and look forward to being involved in his future success.”
Over the last 10 years, the Liverpool-based society has established a multidisciplinary network, including representatives from 12 universities and hospitals, seven pharmaceutical companies and four national AKU patient groups in Europe and North America. While also funding two research programmes into AKU and the first AKU information centre.
“Normally, clinical trials are designed and developed by pharmaceutical companies as it’s a complicated and expensive business,” said Nick Sireau, AKU Society Chairman, whose two young sons suffer from the rare genetic condition. “But when dealing with rare diseases, patients can be proactive and take control of their own future.”