A New Model for Building Collaborative Rare Disease Resource Networks
I've "lived" in the rare space for 27 years now.
As a caregiver for my parents and my grandfather, a caregiver/advocate for my daughter and as a rare patient myself, I've had a front-row seat to some of the best and worst in collaborative medicine.
From local hospitals across the Midwest to our Nation's premier research facilities, I've seen what works for rare disease patients and more frequently, what doesn't.
No one can argue that when a disease state community rallies for a common goal, we are unstoppable. No stone remains unturned.
But for every "win" in rare - be it legislation, increased research funding or grant awards - there is the darker edge of competition among labs, researchers, non-profits and even patient groups.
It's tough to talk about the divisions in the rare community. In a community generally filled with hope and moxie, no one wants to address the lack of shared resources and collaboration, but the divisions are there.
Disease groups are frequently forced to scrap for awareness, research funding, and access to qualified providers. When the rare community is already fractured into small populations that are further fractured by competition and refusals to collaborate, the pieces we scrap for become crumbs.
It's time to ask a few of the hard questions.
- How do we include patients at the center of all we do, not just in theory, but in actual practice?
- How do we respect the education and experience of researchers while balancing the life experience and drive of patients and caregivers?
- How do we evaluate existing resources and identify gaps?
- Where do other industry stakeholders fit into the Patient EcoSystem?
- How do we create standards of care for rare diagnoses that can make the transition into precision medicine when appropriate?
- And finally, how do we build on already established tools - bringing together the experience of established non-profit organizations with the fire and drive of newly diagnosed patients?
Having the unique experience of being a caregiver sandwiched between two generations of rare (while being a rare/undiagnosed patient myself) has been frustrating and enlightening. As my own daughter navigates her journey filled with multiple rare disease diagnoses, the sense of urgency to act is greater than ever before.
Next Wednesday, My City Med will roll out a new multi-step model for rare disease collaboration that is specifically designed to be inclusive, collaborative and effective.
Rare72 is an initiative unlike any other, designed to upend collaboration as we know it. We believe it is the catalyst for change in rare because when it comes to treatments and cures, every patient deserves a seat at the table, even if they can't attend every conference or visit every lab.
#rare72 #rarediseaseday2020 #rarediseaseawareness #rareaware