Raremark white paper highlights need for patient-powered medical education in rare disease

Raremark white paper highlights need for patient-powered medical education in rare disease

London, UK – May 19, 2017.  Education to help physicians recognize the symptoms of rare medical conditions, alongside cultural change within the medical profession, are key to shortening diagnostic odysseys in rare disease, argues a Raremark white paper published today.

Recent qualitative research has shed light on the diverse routes to diagnosis experienced by members of Raremark’s patient communities. It has also revealed which types of healthcare professionals typically miss opportunities to make a timely diagnosis, pointing to gaps in the system that could be addressed by educational initiatives.

Early rare disease-focused training for doctors is just starting to gather pace, and we expect its impact to be felt in the years to come,” said Pete Chan, Head of Research & Analysis at Raremark. “The missing piece to date has been insights direct from the patient community about their lived experiences.

Raremark’s white paper, A new approach to shortening the diagnostic odyssey, also discusses the key challenge of persuading doctors to believe what their patients tell them. Failings in this area may lead to patients having their conditions dismissed, services being withheld, and timely referrals to other specialists not being made.

Pete added: “We hope the insights we’ve generated through our latest work will lead to physicians’ acceptance that rare disease patients have valuable experience to complement their own medical training.

Download A new approach to shortening the diagnostic odyssey.

About Raremark

Raremark’s goal is to transform one million lives in rare disease. Our community managers connect families worldwide with up-to-date scientific information, community insights and research opportunities. Raremark is privately funded and headquartered in London, UK with an office in Boston, US. The company was founded by entrepreneur Julie Walters after seeing first-hand the isolation experienced by families affected by rare disease. Revenues come from patient-led market research, providing anonymized patient data to inform drug development and providing information about research.

Community contact

For patients & families

T +44 (0)20 7034 3216


Partnering contact

Julie Walters

T +44 (0) 20 7034 3216

M +44 (0) 775 362 6967


Media contacts

Pete Chan

T +44 (0) 20 7034 3216

M +44 (0) 775 328 0299