Example One Immediate and Confirmed Leads to Providers with Newly Diagnosed Rare Disease Patients BIOPHARMA With commercially sponsored, targeted searches
of EHR data from healthcare providers


Finding Your Market
in Rare Disease is
Complex and Expensive

Privacy and compliance regulations designed to protect patients make it difficult to find those who could benefit from your solution while increasing the diagnostic odyssey for those same rare disease patients.

Small patient populations in the rare and ultra-rare disease marketplace simply don't have the critical mass for standard marketing techniques to work. This leaves you scrambling for leads and investing critical time and money in efforts that often turn out to be dead ends.

BioPharma White Paper

Validating model compliance authored by leading law firm
in rare disease sector, available post-NDA

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Fair Market Valuation Analysis

Authored by leading a FMV firm in the Healthcare sector, validating cost and revenue streams of model, available post-NDA.

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We believe you should be able to efficiently get your solutions to patients who need them most so they don't suffer needlessly


Unmatched Experience

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.

We serve as a neutral mediator that allows companies like yours to sponsor the creation of targeted searches by rare disease. When a targeted patient is found, the provider will receive an alert about that patient and you will receive a lead to that provider. So, by the time you connect with them, the provider may know if a patient could benefit from your solution.

Analytical Model Review
and Compliance Check

Our team will provide you all information and documentation your legal and medical compliance officers need to understand how our model works.

Develop Search
Criteria and Data Set

We add your disease state insights to a custom data model to target the patients most likely to benefit from your solution.

Test Sample Data
and Refine Data Model

We will test the data model on a known set of sample data and refine it until it consistently generates the best leads for your solution.

Get Immediate and
Confirmed Leads

Get leads to providers with newly diagnosed rare disease patients who could benefit from your solution. It's a win for you, the provider, and the patient.

Slide Let's end the diagnostic odyssey. check_circle Accelerated and accurate diagnosis for rare disease patients check_circle Timely, appropriate, and informed care check_circle Reduced toll on mental and emotional health patients check_circle Mitigated risks of disease progression check_circle Emphasis on patient privacy and regulatory compliance under Health Insurance Portability and Accountability Act of 1996 and the regulations thereunder (“HIPAA”) and the federal Anti-Kickback Statute (“AKS”) Schedule a call 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 grew Genzyme from a modest entrepreneurial venture to one of the world's leading biotech companies and a pioneer of some of the first treatments for rare genetic diseases. Henri passed in May 2017.