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Jul 4, 2019

Last week I was invited to attend and present at a Rare Disease Roundtable hosted by Health Catalyst and McDermott Will & Emery in Boston. A colleague from Aventria Health Group and I were there to talk about ways to enlist stakeholder collaboration throughout the rare disease patient journey.


When not hosting the show, Stacey is co-president of Aventria Health Group, a marketing agency and consultancy. Aventria specializes in helping pharmaceutical, employer, pharmacy, and health system clients improve patient outcomes by creating and leveraging collaborations with other health care organizations. For more than 20 years, Stacey has innovated better-coordinated health solutions benefiting all stakeholders and, most of all, the patient.

00:43 The rare disease patient journey.
02:03 The burden to stay on top of clinical developments falls on patients.
02:14 The major problem with patients tracking clinical developments in rare disease.
03:42 Stacey’s personal journey with a rare disease.
06:19 These stories aren’t unique; there’s a hard reality around rare disease management and treatment.
06:37 “Rare disease management takes stakeholder collaboration.”
07:00 “Payers … need to pay for evidence-based approaches.”
08:04 Rare disease management requires coordination between points of care.
08:57 The tough ask behind improving rare disease management.
09:41 Why Pharma is primed to affect organizational change.
10:50 “It is less about an individual patient … and more about a population of patients.”
11:34 The effort required to collaborate to treat rare diseases has to be less than or equal to the perceived reward.
12:06 “What Pharma needs to offer up is more than a molecule.”
12:47 Account managers, go to for blog posts on helping account managers develop the skill set to create collaborative relationships.
13:28 It is best to include clinical trial endpoints in the package insert that reflect institutional and/or payer needs.