When we are children our parents emphasize the importance of sharing, playing nice with others, and making friends. As we become adults, we tend to build walls, protect our ideas, and to work in silos—looking over our shoulder to make sure no one is stealing our ideas. We offer teasers, snippets of information, but keep the best bits to ourselves. I believe, however, that if we want to solve the most difficult puzzles and break through the most hardened barriers, we must construct a community of collaborators without barriers. Nowhere is this truer than in rare disease.
Rare diseases are often forgotten, overlooked, misunderstood, and dismissed. The world is fast paced, noisy, and full of distractions. The path for better treatments and cures for rare disease often feels like being lost in a forest filled with unknowns, wrong turns, and dead ends. But I believe the bright light of hope can illuminate the path to progress and that by uniting under that hope, our trek will become both more joyful and expedited.
If we want to solve the most difficult puzzles and break through barriers, we must construct a community of collaborators.
Creating Community
The first and most critical step toward progress is an outstretched hand. If we don’t wish to be wandering the forest alone, we must be willing to invite others on our journey. When we seek out others and join them in their efforts, it can be surprising how quickly we can clear away the shadows that block our way.
As a longtime leader in the health care and rare disease spaces, I have seen firsthand the power of inviting others to join you in your journey and accepting opportunities to join theirs. I am consistently amazed how the simple ask of inviting others to join you creates a trust and opens doors in unknown ways. Those working in nonprofits do so because they wish to leave the world better then they found it. It makes sense then that leaders in this space are willing to share, support, and promote the goals of others.
I am grateful for the many nonprofit organizations and leaders who have accepted my invitation to walk forward together. I have learned so much in our journey together and take pride in the advancements we are making together as a result of our collaboration.
The next step is to go wide. Who else is in your space? Where are they? How can you reach them? Who is not in your space but could be?
A common mistake when building community is to only reach out to those in your immediate vicinity. But, to truly break through, we must reach out far and wide. We must pull together groups, institutions, companies, and individuals to work side by side. As we build the community, we must not allow for the siloing to start anew. This requires deliberate efforts, building of spaces and opportunities for collaboration, guidelines for effective engagement, and a willingness to change.
Structuring Success
Throughout my career, I have worked to build communities that harness the power of the collective. In rare disease this means giving voice to patients, caregivers, clinicians, industry, regulators, funders, other organizations, corporations, media, and all who are passionate about improving health and the lives of those impacted by chronic illness. But, without structure, such collaborations can quickly devolve into chaos, which can undermine the power of the collective. You must structure alliances, paths for sharing, opportunities to co-work, and safe spaces for unrepresented voices.
My most recent efforts in this space serve as an example of how to put this community building into practice. The Foundation for Sarcoidosis Research (FSR) Global Sarcoidosis Clinic Alliance is an effort to bring all interested in sarcoidosis together. In this effort, our team at FSR have outstretched our hands to clinicians, patients, caregivers, regulators, corporate and industry partners, and others to come together to improve the everyday care of those impacted by sarcoidosis. It has been particularly exciting to see how quickly the community has begun to rally around these efforts. Thirty-five Founding Member clinics have joined this effort since its launch in May of this year, with great interest and a collaborative spirit.
We have built a structure for sharing and a platform for innovation and creative exchanges. We serve as the community convener and facilitate the community coming together. In just a few short months, we have seen great enthusiasm. We are building opportunities to break down the walls to allow for meaningful sharing and collaboration that no doubt will lead to extraordinary outcomes on our collective journey.
Walking together on the path to progress is the sure-fire way to illuminate the path towards better treatments and a cure.