Patients and Advocacy Groups
Rare diseases are more common than most people realize, and Pulse Infoframe is paying attention to them.
Did you know that:
- There are more than 7,500 identified rare diseases and genetic sequencing is discovering more and more each year.
- While the numbers of patients presenting with a specific recognized condition are small, there are actually an estimated 350 million such individuals spread around the world.
Here are some of the biggest issues facing those living with rare diseases:
- Gaining access to medical specialists.
- Finding others with similar medical issues.
- Obtaining real world evidence to influence treatments and policy makers.
- Gaining access to relevant drug trials.
- Benchmarking personal health.
That's why Pulse Infoframe created a community platform using its proven healthieTM technology and advanced registry design. The platform can include all the participants in the treatment and study of a specific condition and offers information to support patients, pharmaceutical companies and researchers. This collaboration also assists in matching willing volunteers with pharmaceutical drug trials.