The Rare Disease Institute (RDI) is a new initiative aimed at improving collaboration between rare disease stakeholders. The aim is to facilitate faster diagnosis and better care for rare disease patients. Considering the fact that for 7000 rare diseases there are only 400 approved therapies, change is clearly needed.
The ultimate goal is to speed up the research process and get treatments to patients faster. Moreover, this institute aims to ensure that the right treatment is given to the right patient the first time.
Improving education on the latest innovations (for patients as well as their doctors)
Empowering pharmaceutical companies in the area of rare disease
Improving access to the most recent novel developments
Aiding in the earlier diagnosis of patients who have progressive conditions (and eliminating misdiagnosis)
Collaboration resources include:
Natural language processing
Electronic health records
These partnerships are so important because they bring the patient voice into the conversation of treatment development. Further, by fostering collaboration between pharmaceutical companies, the planning and recruiting for clinical trials as well as the long-term goal of therapy commercialization will be improved.
We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!