Dr Rick Thompson
CEO, Beacon for Rare Diseases
“This is our one chance. We have to make it count.” These words have crossed all our minds, defining a sense of pressure, a focus point and a pivotal moment.
Whether said during a vital work meeting, exam, or even a sporting event, these words represent a time when we take the weight of expectation on our shoulders and feel we must perform.
Rare disease – high stakes
Now imagine having that feeling when funding for the first-ever treatment for a rare disease is on the line, when an NHS service may be commissioned or when a family needs to secure benefits. These are real pressures facing rare disease patient organisation leaders daily.
Rare patient organisations support people affected by a specific rare condition by connecting families, driving research and supporting decision-makers. Their impact and importance cannot be understated, but the challenges faced by those leading them feel overlooked.
From parent to leader
Most leaders are carers of children living with a rare condition. Parents who decide they won’t accept the status quo; they must change their family’s future. In founding a charity, they begin a journey where they assume a position of leadership for a community otherwise bereft of hope. They carry the expectations of all those affected.
They become representatives for a diverse community with different experiences of their condition. The pressure of representing them and delivering change is huge. Almost all will face a pivotal moment on their journey, where they perceive their actions and decisions will change the fate of their community. Some may have to choose between research that’s right for the community or their own family.
Rare patient organisations support people affected by a specific
rare condition by connecting families, driving research and supporting decision-makers
Support and recognition
None of us knows how we would face such moments, but we can at least perceive the mental burden. Rare leaders need support. At Beacon, we provide coaching, mentoring and community connections, all designed to lessen the burden of rare leadership. I hope, this year, we can see these challenges more widely recognised, and organisations working with rare leaders provide the support and resources they need to support themselves, one another and their communities.
