Lessons from New York - Empowering Patient Leaders in Rare Diseases

Recently, I had the opportunity to visit New York during some "down time”. It was a fun and fast-paced experience that left me feeling energized and excited.

I couldn't help but draw parallels between New York (large, developed) and the patient organizations operating in the more mature therapy areas, and my hometown in Wales (small, less established) and many of the patient groups working within the rare disease space.

Regardless of their size, both share the same qualities:

1. Cities/towns: Infrastructure, economy, culture, community, public safety, and security
2. Patient advocacy organizations: Patient empowerment and education, advocacy, community building, fundraising, and partnership for patient advocacy organizations

Where am I going with this?

Next week, I will be attending a workshop that will focus on a therapy area where substantial progress has been made - a “mature therapy area”.

Much like my town could learn a lot from New York, my goal will be to learn from this established advocacy space, bringing best practices back to the less advanced landscape (where most of Colab’s work happens).

My initial thoughts:

• Strategic planning – mature and well-established patient organizations will have comprehensive plans that guide their work and serve as a blueprint for success
• Partnership building – mature patient organizations will have strong relationships with the community (other patient organizations, healthcare providers, and government agencies)
• Fundraising – successful patient organizations will have effective fundraising strategies, including grants, special events, and community campaigns
• Advocacy – mature patient organizations will have implemented successful advocacy campaigns – from grassroots efforts to media outreach and lobbying
• Communication – effective patient organizations will have strong communication strategies, (newsletters, social media and conferences) to keep their supporters informed and engaged

There will of course be several limitations (limited resources, different organizational structures, resistance to change, lack of experience, difficulty in reaching patients/raising awareness, etc.) but I am eager to explore the exchange of ideas between mature and less established patient organizations and see how they can be adapted to bring positive change to the rare disease community.