This week BioPontis Alliance for Rare Disease and the Hereditary Neuropathy Foundation (HNF) announced that they will be partnering up to research and develop treatment for a common form of Neuropathy known as Charcot-Marie-Tooth (CMT) Disease.
It was discovered nearly a century ago by three doctors: Charcot, Marie and Tooth, and there is still no cure. This disease affects one of 2,500 people. That’s 125,000 people in the United States, 23,000 people in the United Kingdom and 2.6 million people worldwide. In the past 20 years scientists have been able to identify the genes associated with the disease.
In the partnership, HNF will regulate resources such as: Patient registration and bio-banking; as well as supporting translational research. BioPontis Alliance will supervise scientific execution, regulatory strategy, patents and business partnering. HNF will be able to target patient communities in which market research can be conducted, clinical patient registration, clinical outcome, and advocacy supporting the patient community.
“This is an open platform, that can incorporate multiple approaches to solving the puzzle of how to save the nerve tissues that are under siege in CMT,” said Richard Basile, co-founder and COO at BioPontis Alliance. “We have designed our model for conducting drug discovery with the expectation that international collaboration among scientists, patient organizations, biopharmaceutical companies and philanthropic supporters is essential.”