Written by Karen Roberts, RARE Revolution, with insights from Samantha Barber, CEO Gene People and the RARE Revolutionaries community

In the rare disease space, there are a great many small charities often served only by a handful of dedicated volunteers. But if a charity’s resources and knowledge are concentrated around a small group or even a singular person how can they overcome challenges around continuity and legacy?

Many charities in the rare disease sector are based around the efforts of a small group of people—in some cases they are the only charity for that disease. Often, they are sustained by one or two individuals working on a solely voluntary basis.

But what happens when the founder or founders can no longer continue, perhaps in the event of increased family or work commitments, illness, care responsibilities or the need for a well-earned retirement?  How can such charities overcome challenges around continuity and legacy planning?

Planning for leadership succession should ideally begin at the charity’s inception. Samantha Barber, CEO of Gene People, suggests that founders should adopt an entrepreneurial mindset. “Many entrepreneurs think about when they would want to move on from their creation from day one,” Samantha notes. “They know what they want to achieve and by when.” We tend to consider such activities and our own careers as a seasonal event.  Samantha is clear that by learning from this approach we can make better decisions within the charitable sector. By considering the eventual transition early, charities can avoid the pitfalls of being indefinitely tied to a single individual.

We asked charities on our social media pages about their experiences. Jackie Murphy notes their organisation’s proactive approach, sharing on the RARE Revolutionaries Facebook Community that they had “carefully constructed succession plans” lined-up in readiness for future transition of key personnel.

Jackie added,

“We are 100% volunteers—everyone is pro bono; we have a mix of volunteers on the committee—patient, parent, a researcher and two members who have no direct connection to the disease and it works very well for us. Securing funding for salaries is very hard but we can cover expenses.”

When a charity serves an ultra-rare community, often the cohort of beneficiaries is incredibly small (perhaps only a handful of people). Such a small community with few new members joining annually inherently less sustainable—both in terms of people power of volunteer potential and in scope for community fundraising. This can mean a charity’s expertise and networks are concentrated in one person over a prolonged period, which is a very high risk for the organisation.

Planning for legacy and change

With the concentration of expertise and networks within a single person posing a significant risk Samantha poses a stark question, “How would your charity survive and thrive if your key person went under a bus tomorrow?” To mitigate this ‘bus factor’, she emphasised active management where trustees and staff have clear access to operational knowledge, commitments and donor relationships. Without this—the organisation remains in a precarious position.

Furthermore, the risk of burnout is high when one individual manages conflicting demands. Samantha warns that without active risk management, the reliance on a single leader creates an unstable environment that threatens the charity’s ability to function effectively.

Many small patient organisations operate as Charitable Incorporated Organisations (CIOs) or are unregistered. Early discussions about the organisation’s legal status are vital. Samantha stresses the importance of being “100% sure about the governance and compliance requirements.”

She adds, “While no one gets involved in a charity to fill in paperwork, we all need to be assured that governance is performed properly, not least to give that assurance to donors. Trust is crucial if a charity is to be able to fulfil its mission.”

To lessen the burden, some charities bring in paid staff. However, that creates a year-on-year financial burden and requires long-term investment to make it sustainable. Something which many small charities simply cannot achieve.

Talking of the importance of succession planning, Allison Watson, CEO of Ring20 Research and Support, which aids individuals, families and healthcare professionals affected by Ring Chromosome 20 Syndrome or r(20)—a rare epilepsy syndrome—shared her insights with the RARE Revolutionaries Facebook Community. 

“This is so hard but so important to do. We will never be here forever—no matter our commitment to the cause. At Ring20 we’ve had it on the agenda every year for our annual Strategy Day and it always gets bumped or minimally discussed. 

“The smaller your community, the smaller the field of possible individuals prepared to step up to volunteer, let alone consider taking over.

“We create our own enigma that frightens other members of our community into thinking they can’t do what we do—but they forget, or don’t realise, that we knew nothing when we started. You have to start with a willingness to learn and ask questions. I’d love to hear how others have cracked this nut!”

Building resilience

If a charity does end up closing, it can mean the loss of decades of patient knowledge, research partnerships and community trust. If a charity faces the possibility of closure, it is crucial to prepare contingency plans to ensure an orderly process and smooth transition. Samantha recommends seeking support from organisations like The Decelerator to maximise the preservation of vital assets, such as patient knowledge and research partnerships. Finding a “nearest home” for these assets—perhaps within a more general organisation—allows the community to continue receiving support.

She said, “This might mean speaking with more general organisations to see if they are willing to take on that work. Do note this is a legal process and advice would be needed. At the very least, the community might find a wrapping-up report including all the achievements and progress made useful and important.”

Giving time for people to grieve the loss of the organisation is important, Samantha adds: “The community, volunteers, supporters, staff, if there are any and trustees should not underestimate the impact it might have on them personally.”

Where continuation of the organisation can be achieved there are practical steps that boards can take to build a resilient charity that can thrive beyond its founders. Samantha says these include making sure governance and compliance are up-to-date and following best practice for the size of organisation, as well as making sure finances are well-managed with a good reserve.

Ensuring a clear vision, mission and values, and that the positive impact the charity has on its community can be evidenced, as well as conversations with the founder about what they want to achieve, are also vital.

Samantha says, “By focusing on these key issues, the board will have a well-run, effective, fundable charity and no shock effect from a founder departure. Founders are often charismatic individuals driven by personal experience of gaps in existing provision. This is often vital in the early days, but on occasions founders can find it difficult to move on from their personal experience and take a broader view of the needs of the population they exist to support. In such instances, the Chair and Trustees need to be prepared for what may be difficult conversations about the strategic direction of the charity and the best way to achieve this.”

Umbrella organisations, mergers and alliances

Mergers and strategic alliances have a role to play in helping small, rare disease charities remain sustainable. Both have different processes and results Samantha shares, “Boards need to consider both very carefully. In terms of sustainability, a merger of two or more organisations will result in fewer organisations working with, and for, a specific community. It normally means that there is one larger organisation. It can also mean that there will be redundancies or redeployment within the staff body and/or volunteer, and that there will be one board of trustees. This can reduce competition for funding from the same funders, especially grant and corporate funding and sometimes philanthropic funding.”

A strategic alliance can include activities such as forming a coalition for an awareness campaign or agreeing to undertake a joint funding campaign to raise funds for a specific research project.

Succession planning doesn’t just cover the end of a CEO’s tenure, it also includes planning for death, illness or disagreements. Umbrella organisations can provide support as well as contact with other charities in their network who may have experienced similar issues.

Samantha says, “In terms of long-term sustainability for the rare disease sector, I, like my fellow rare disease CEOs, are vocal in the need for industry and the healthcare system to pay fairly for the work that patient organisations do.

“Founders create an organisation in the hope of change for their community. People continue to fund it because they care about and support that community. Which is great, except it can lead to disparity in provision. So, championing the need for funding is paramount for the umbrella organisations in our field.”

But what does an effective national approach to supporting leadership succession in patient organisations look like and who needs to be involved?

Samantha in clear, “Succession planning in both board and executive roles is so individual to each organisation that it would be difficult to ensure a national approach. There is, however, a strong role for umbrella and infrastructure organisations to play by providing guidance and support.”

Lastly, but importantly, perhaps the community also have a role to play here. It can be easy to sit on the sidelines as a beneficiary, safe in the knowledge that another will take the strain and responsibility on behalf of the community. But grassroots organisations need the whole community on board if they are to survive. Today, we are seeing many small organisations collapse simply because there is no one willing to step forward to release founders from often decades of service—particularly acute in ultra-rare charities, as Allison explained—meaning their only route out is closure or death in service. 

So, while a global response to succession planning may be far off, everyone in the community has the power to ease the burden by stepping forward to help carry the load. Combined with a move toward viewing these roles as ‘seasons of involvement’—mirroring the corporate world—rather than the need for lifelong commitment, could just be the answer to keep both the organisation fresh and relevant, and allow dedicated founders and volunteers to enjoy a well-deserved and managed off-ramp when the time is right. 

To understand more about the founder perspectives and the importance of succession planning, please visit: https://rarerevolutionmagazine.com/rare-insider/stretched-thin/

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