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Lost in Transition

Treating rare disease shouldn’t be like a bad game of telephone, with each step generating chaos and confusion. Patient adherence suffers, quality of care diminishes, manufacturers miss out on vital feedback and cost goes up. But imagine if you could cut past all that. We did.

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September 07, 2017

Dohmen releases new white paper on how better patient understanding leads to improved outcomes

With rare disease patient adherence ranging between 58-65 percent, many orphan drug manufacturers are asking the important question of “why is adherence so low?” They traditionally research and refine their market access, pricing and distribution strategies to find improvements. New insights from clinical care experts and patient advocacy organizations also call attention to the importance of understanding the unknown and unmet needs of the patient journey.

Dohmen has released its latest white paper, Precision Medicine Meets Precision Patient Support, and highlights how a more comprehensive approach to better patient understanding is leading to improved outcomes. In the paper, Nicole Boice, Global Genes CEO, shares:

“A better understanding, ideally, would facilitate a true partnership among patient communities and the industry. It would inform the development of support programs that would have a meaningful impact on patients’ and families’ lives. Any time a company truly understands the patient experience and journey, it is a win-win for all involved.”


Download the White Paper


The white paper highlights an integrated outsourcing model for orphan drug programs. With unique wrap-around services for rare disease patients, the model is driving better outcomes and adherence above 90 percent. 

“You’ve got to see the patient as an individual, not a category or community,” says Linda Newberry-Ferguson, DLSS Senior Vice President of Clinical Navigation. “Patients with the same disease on the same therapy will often have different needs and reasons for nonadherence. Through our approach, we find patients are more likely to do better, stick to regime and take medications like they are supposed to.”

Read the white paper today and learn more.