Collaboration often leads to greater success. Two advocacy groups, the Hereditary Neuropathy Foundation and True Reply have done just that to benefit patients with Charcot-Marie-Tooth disease. Their combined efforts focus on improving patient focused research, enhancing the design of and involvement in clinical trials, and making the needs of patients more known. Keep reading to learn more, or follow the original story here.
On September 28th of 2018, the Hereditary Neuropathy Foundation (HNF) plans to host a Patient Focused Drug development Meeting. As an FDA externally-led meeting, the HNF hopes to put patient voices at the forefront. Their main objectives center around clarifying the needs of Charcot-Marie-Tooth disease patients to the FDA, drug producers, and essential stakeholders. One goal is to learn how patients view the risks and benefits of treatment for Charcot-Marie-Tooth disease.
The meeting consists of patient testimonies and presentations from leading researchers involved with Charcot-Marie-Tooth disease.
HNF views its partnership with True Reply as an opportunity to not only raise awareness, but also collect crucial patient-reported data. The key to this lies in True Reply’s voice activation technology or VAT. The technology True Reply provides and develops allows for knowledge to be furthered from the point of view of both patients and health care providers says HNF’s CEO and founder Allison Moore.
One major hurdle with Charcot-Marie-Tooth disease is that it is often misunderstood. VAT technology will enable health care providers, researchers, and treatment developers to access patient voice data to better understand the disease and the process of living with it. HNF hopes this will allow for the optimization of current treatment options while expanding the search for new ones.
As an additional method of support, True Reply will provide novel fundraising to HNF through cryptocurrency sales. True Reply’s ongoing token sale promises to donate $10 for every Ether raised, up to $200,000. More information on this campaign can be found here.
True Reply supports the efforts of HNF because they are dedicated to improving patient lives – especially in the case of those suffering form Charcot-Marie-Tooth disease. Their technological developments in voice activation technology have allowed True Reply to truly show the power of the patient’s voice. Patient testimonials –hearing from patients who deal with with chronic pain and a sense of hopelessness– played a huge role in establishing True Reply’s mission.
