Building awareness and communities to support and find treatments for Rare Diseases and Genetic Conditions
Parent Project Muscular Dystrophy (PPMD), the leading nonprofit in the United States focused entirely on finding a cure for Duchenne muscular dystrophy (Duchenne), launched the Duchenne Central mobile app, in collaboration with Siren Interactive, a digital relationship marketing agency focused on rare disorder therapies. The app, [...]
If it seems like we are always asking ourselves this question, then that’s probably a good thing. All relationships require nurturing and regular self-examination. The only way to create strong partnerships is to ask ourselves now and then what we’re contributing and whether or not [...]
I attended the World Orphan Drug Congress last week in Washington, DC, and Siren Interactive presented the workshop, “A Roadmap for Patient Advocacy Investment.” In the rare disease space, patient engagement is critical to every step of a drug’s development, including filling clinical trials, getting [...]
Having trouble visualizing the impact of rare and genetic diseases? In honor of World Rare Disease Day, Siren Interactive has created a simple infographic to make the stats on rare a little easier to understand. Click the image below to learn more.
Rare Disease Day is celebrated worldwide on the last day of February, so this year we’ll celebrate on Thursday, February 28th. For 2013 the theme for Rare Disease Day is “Rare Disorders Without Borders.” Nowhere is this more evident than the online space, where rare [...]
The medical research community is waking up to something that people with rare disorders have understood for a long time: We’re all in this together. Finding new treatments in time to save lives will require everyone’s efforts—not just doctors and nurses, not just researchers, not [...]
For orphan drugs, the marketing strategy should include increasing awareness and education about the disease. This is a key mission for many rare disease advocacy groups. So in the orphan drug space, the best marketing has advocacy as a part of it. Siren invited a [...]
