I have met some amazingly innovative people in my travels. Many who are dedicated to improving the lives of those living with rare diseases. Wendy White is one of those people. Wendy is the founder of Siren Interactive. Siren is a digital relationship marketing agency focused exclusively on addressing the challenges and unmet needs of patients, caregivers, and physicians dealing with chronic rare disorders. Wendy and I serve together on the board of the National Organization for Rare Disorders (NORD). Wendy approached me recently about a partnership with PPMD. Siren was interested in developing a mobile app for a rare disease group and they wanted to choose PPMD as the organization. What started as a conversation about the needs of the Duchenne community and what sort of app would be helpful, evolved into me proudly announcing today the launch of the Duchenne Central Mobile App.
Duchenne Central allows you to search for Duchenne clinical trials and clinics near you or near a specific location. You can also keep track of the latest news, bookmark items, and share with family and friends. Currently, there are no FDA-approved treatments for Duchenne; however, there are several potential therapies in development and currently in clinical trials. It’s essential that patients and their families have ongoing access to information on the latest clinical trials. This app will help to keep families in the know in real time.
Social media seems to evolve at the speed of light. It is hard to keep up. God knows I try my best to, but every week there seems to be something new. PPMD makes sure to stay on top of the most useful social media platforms that exist to enable the Duchenne community to connect about trials, research, care, and advocacy. I don’t pretend to understand how to get these platforms up and running, that is why we work with groups like Siren- they know best how to design these platforms and get them up and running. PPMD brought about the first mobile app for Duchenne in 2011: PPMD .... The addition of Duchenne Central to our arsenal of resources for patients is exciting to say the least. As more trials come online for patients, it will become even more important that patients have direct access to this information so that we can recruit for these trials as quickly as possible.
Explore the new app and learn more about its development from our friend Wendy White at Siren by reading her blog. Thank you Siren!