Together we can shorten the patient journey.

  • Improving access to testing and therapies for patients
  • Educating patients and physicians on the latest diagnostics to improve patient care
  • Empower the development of new therapies to treat and cure rare disease

Test. Diagnose. Treat.

Time is the enemy when it comes to any illness. It’s especially the case for rare disease patients who often go years before they receive the right diagnosis and the appropriate treatment. For the most part, the reason is that patients aren’t tested for the disease. Symptoms are confused with other diseases and the provider and patient share the frustration of trying to rule out illness after illness.

No one wins in this scenario, from the emotional turmoil to the expense, to the time and resources spent. The Rare Disease Institute (RDI) has a simple mission to address this — get the right test to the right patient with the right treatment as fast as possible. The Institute can accomplish this by focusing on collaborating with key stakeholders across healthcare involved with testing, diagnosis and treatment of rare diseases.

Pharma

Accelerating research, clinical trial planning & recruitment, and commercialization of targeted therapies

Patient Advocacy Groups

Improving education about testing via those groups best suited to influence the patient journey

Providers

Reaching providers with pertinent information that can help them better recognize rare disease testing candidates

Diagnostic Labs

Promoting awareness of those diagnostics most suitable for diagnosing rare disease

Partnering for speed

The Rare Disease Institute is partnering with pharmaceutical companies, reference and genetic testing labs, health systems/academic centers and patient advocacy groups to improve access to testing and therapies for patients, educate patients and physicians on the latest in diagnostics and empower the pharmaceutical industry with the development of new therapies to treat and cure rare disease.

Collaborators include Antidote, Bioreference Laboratories, Blueprint Genetics, Datavant, Fulgent Genetics,, Labcorp,, Medical College of Wisconsin Genomic Sciences & Precision Medicine Center, Neogenomics, PWN Health, The United Leukodystrophy Foundation, Quest Diagnostics

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