Rare Disease Data Trust – Rescuing Rare Disease Patients From Their Diagnostic Odyssey

Commercially Driven Discovery of Targeted Rare Disease Patients For BioPharma

New Substantive Service Line for Healthcare
Providers

Accelerated and Accurate Diagnoses for Rare Disease Patients

Healthcare is Built
for the Mainstream

Rare disease patients often get lost between the provider's scope of knowledge and experience. Privacy and compliance regulations can complicate collaboration between BioPharma manufacturers (who have expertise in rare disease) and healthcare providers (who have patients with rare diseases, often without knowing).

BioPharma Companies

Struggle to find the patients who need their solutions

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Healthcare Providers

Have difficulty providing quality care for these patients

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About Rare Disease

Patients search for answers and endure frequent misdiagnosis and inappropriate care

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We believe it should be easy to efficiently diagnose rare disease patients so they can receive the appropriate care they deserve

OUr Team

Our team's combined 40+ years in the rare disease marketplace and personal experience with the rare disease diagnostic odyssey led us to believe that there had to be a better way.

We knew the data to accelerate rare disease diagnoses and target patients existed in the electronic health records. We just had to figure out how to access it while protecting patient privacy and maintaining legal compliance. Rare Disease Data Trust is the solution.

Data Partnerships

75% of the patient population resides in community-based healthcare systems. We work on behalf of healthcare providers to safely and securely search their electronic health records for targeted lost or undiagnosed rare disease patients

Search Sponsorships

BioPharma companies looking for rare disease patients sponsor searches through Rare Disease Data Trust and have input into search data models.

Alerts & Educate Providers

Healthcare providers are notified when one of their patients meets criteria that suggest the presence of targeted rare disease. We provide disease state education to physicians with suspected patients. Patients and providers can then independently decide on the best path forward.

Bridge The Gap

Rare disease patients are quickly identified, triaged, and diagnosed, without the typical and dangerous diagnostic odyssey. Providers and patients can make informed clinical decisions about their care. This allows healthcare providers to administer quality care for some of their most vulnerable patients, while generating meaningful revenue from patient-centric data mining.

How it works

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Henri Termeer, one of the greatest and most successful visionaries in biotech. Henri Termeer believed you could change the world and he did so for many people suffering from devastating diseases. He often said that if we can create medicines to help people, it is our responsibility to do so no matter how complex or difficult the task. Under his leadership, he fulfilled this mission and in doing so grew Genzyme from a modest entrepreneurial venture to one of the world's leading biotechnology companies and a pioneer of some of the first treatments for rare genetic diseases. Henri passed in May 2017.

Let's get to work.

We're here to help make the right connections when you need them most.

With Rare Disease Data Trust you have a reliable partner who cares about the patients you serve and the success of your business. Our team has decades of real life experience in the rare and ultra-rare disease marketplaces as well as with healthcare providers and we're here to put that experience to work for you.

Accelerated and accurate diagnosis for rare disease patients

Real-time leads to providers with newly diagnosed targeted patients for manufacturers

Substantive incremental revenue from a new service line that profoundly serves patients

Commitment to compliance with HIPAA, Stark, AKS and the other relevant regulations

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BioPharma Companies

See how much easier it can be to bring your novel solutions to the patients who need them by compliantly facilitating the discovery and diagnosis of lost rare disease patients

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Healthcare Providers

Learn how you can realize the value of your electronic health record data and generate substantial incremental revenue while elevating the care of some of your most vulnerable patients.

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Commercially Driven Discovery of Targeted Rare Disease Patients For BioPharma

New Substantive Service Line for HealthcareProviders

Accelerated and Accurate Diagnoses for Rare Disease Patients

BioPharma Companies

Healthcare Providers

New Substantive Service Line for Healthcare
Providers