Bridging the Gap - Why Sharing Best Practices is Key to Achieving Positive Change

As a follow-up to my previous blog post, “Lessons from New York - Empowering Patient Leaders in Rare Diseases”, I wanted to share some insights from a recent workshop I attended focused on a mature therapy area. My aim was to learn from established advocacy groups and bring back best practices to the less established landscape where most of Colab’s work happens.

While I won't delve into the therapy area-specific outcomes of the workshop, I want to highlight the bigger picture from an advocacy perspective. The mature patient organizations demonstrated comprehensive plans that guide their work and serve as a blueprint for success. They also showed strong relationships with the community (including working with members of the EU parliament), effective fundraising strategies, and strong communication strategies to keep the community informed and engaged.

With all this in mind, one of my key takeaways following the workshop is the need for capacity building programs in patient advocacy. To bridge the gap, more advanced organizations should have a responsibility to share their experience to empower rare disease or less mature patient organizations. Additionally, these less established groups should not be afraid to reach out and ask for support/guidance – why reinvent the wheel? Doesn’t everyone need a mentor?

Although gaining knowledge and expertise in patient advocacy is a continual process, there requires a commitment from patient advocates at all levels to continually build their skills and importantly utilize resources and support from more established organizations.

One resource I came across after the workshop was the WeCan Academy, which provides training and mentorship for patient advocates. WECAN offers courses for the patient community and stakeholders to build their knowledge, expertise, and skills and improve the outcomes of all cancer patients.

I am committed to continuing to learn and grow and sharing my knowledge with others in the rare and broader disease community. By building capacity in patient advocacy, we can bring about positive change for patients and their families.