by Alyson Doughty
I recently attended #RareDialogue2019! A huge #RareDisease conference in Toronto, hosted by the Canadian Organization for Rare Disease (CORD) & Rare Disease International (RDI). It was the largest and most significant gathering of rare disease advocates – from patients to policymakers, from gene manipulators to AI gurus, from local support groups to international research networks who came together to create a vision for Rare Disease Strategies in the 21st Century.
On behalf of The Rare Disease Foundation (RDF) and the community we serve, I attended several workshops and discussions that reinforced my belief that RDF is properly supporting the community’s expansive issues by being open, agile and transformative. P2P groups support the need for inclusion and invaluable resource sharing. Our community can come together and host fundraising event supported by our staff and expand our reach beyond patients and families via a “Rarefinds” event. We are the only foundation bringing researchers, families, and doctors together via micro-grants.
How Advocates Transformed the Rare Disease Landscape and the Transformative Role of Advocacy in Advancing Rare Disease:
We have experienced the transformative power of social media that brings people together who would otherwise be isolated. That discussion has now been expanded at this meeting to break down the disease-specific silos. Online patient-centered registries allow communities to share relevant data and share common experiences. However, the question remains: are these groups organized well enough to connect with the broader network of individuals who have also dedicated their lives, passion and careers for the same goal? Researchers, Pharma, and Policymakers were all together in the same room exchanging ideas about how to move beyond experience sharing and individualized interest to a wholistic Rare Disease Consortium including all the voices at the table working together, rather than further fragmenting the community. Which is exactly what RDF is doing now through their many programs.
Patients, Parents, and Patient Groups:
As the P2P Program Officer for the RDF I have come to understand how each of your communities is different and the same. Access to medication, reimbursement for therapies, inclusionary housing and even rare disease definitions vary by province. What one community may have access to is not a given in a neighboring province. This is why I believe so strongly, and am endlessly encouraged to drive the P2P Resource Network to wherever local communities need one and have the volunteer resources that we can support. It is difficult at this point to have a National dialogue without addressing the issues of diversity and equity in rare disease. How do we hold a National conversation when we still have not had conversations about the greater alignment of provincial policies and regulations? If this conversation was formalized we would be able to support the urgent implementation of proven best practices across the country.
My biggest takeaway and the mind-boggling conundrum is – Alliances. How do we, as patients and patient advocates promote multisectoral collaborations and industry partnerships? As our very own Isabel Jordan spoke about, are we empowered enough?
Not yet, but at the RDF we are working on changing that. The solution to our lack of empowerment is patient involvement skill development. This entails training the community on network building techniques, media coaching, and much more. We are currently working on securing a grant that will allow us to bring together 12 patient advocates from our community to attend a one-day leadership summit. The goal is to better prepare our P2P group facilitators with the tools to take on the role of being a Rare Disease advocate. Stay tuned as the details unfold!
Patient Groups and Research
The final day of the conference was a workshop setting and was filled with amazing insights from seasoned professionals focused on a number of aspects that can help advocacy groups. One of the more engaging workshops on patient engagement skill development included a lengthy discussion about the value of microgrants. Many patient groups in Canada are well aware of RDF’s microgrant program and the value it provides to helping young researchers enter the rare disease community while also helping families better manage their rare affliction. For more information about our microgrant program, click here.