Supporting rare disease caregivers at work shouldn’t be a rare occurrence
Written by Paul Kidwell, communications and patient advocacy consultant and co-host of the podcast, InSickness. Men and the Culture of Caregiving
Across global work ecosystems, millions of employees are silently straddling two full‑time roles: the job they are paid to do, and the caregiving responsibilities they face at home—unpaid. As I have often pointed out in previous columns, rare disease caregivers shoulder burdens that are heavier, more complex and often invisible to colleagues and employers. But caregivers can no longer hide in the shadows at work and employers must treat caregiver support as a strategic, moral and economic imperative.
All caregiving experiences are unique, but rare disease caregivers face challenges that are quite different from non-rare counterparts. Rare diseases are often missing identifiable diagnostic pathways, recognised treatment practices or expected disease arcs. Within the rare disease experience, it is not uncommon for families to spend years searching for disease information, triaging disjointed care systems and knitting together a specialist network. The emotional, logistical and financial toll on caregivers can be profound. In this role caregivers become researchers, case managers, medical sherpas and emotional anchors, all while meeting deadlines and performance metrics at work.
Yet, a great many workplaces are still created and managed with a different reality that lacks caregiver sensitivity. Traditional employee benefit programmes rarely take into account the mercurial nature of rare disease care where employees are constantly in a reactive mode that enables them to respond to emergencies in a moment’s notice. Although the care experience for my wife was in the non-rare disease of Parkinson’s, I had no shortage of unexpected work moments that required my full and immediate attention.
As her disease progressed, she would experience “freezing” episodes at work where she would be unable to move, heightening her risk of falling and related injury. It was also emotionally traumatic for this very private person to become the centre of attention. These incidents would require me to leave work and come to her office to ensure she was okay.
Many caregivers will do their best to hide these demands, fearing stigma or the perception of being less of a team-player. As a result, employee caregivers perform in stealth while they absorb stress that is likely to impact their well‑being and productivity. Not to mention an employer’s willingness to offer support.
Companies that invest in caregiver‑friendly policies see measurable benefits1. Moreover, in a competitive talent market, supporting employee caregivers demonstrates empathy and makes business sense.
For rare disease caregivers, the need for employer support is especially acute. Particularly as they weigh the financial demands of high medical costs, limited insurance coverage, and the expense of specialised care. Also, the lack of local specialists’ forces families to travel to distant care centres which can disrupt work schedules, childcare and homelife. Workplace flexibility is a must and having remote‑work options, flexible scheduling and paid caregiver leave is a welcomed lifeline that can ensure sustained employment.
While the importance of compassionate company policy cannot be overstated, corporate culture matters just as much. Employees must feel safe sharing their caregiving stories without incurring professional consequences. Empathetic leaders who bring these conversations out in the open help normalise the caregiving experience. When caregiving is treated as a common human experience rather than a private burden, employees feel seen, valued and supported. Also, those non-caregiver employees will show a greater willingness to embrace and support their co-workers.
Of course, once these dialogues begin, the question becomes; “what now?” How does a company turn this openness into integrated tools or programmes that benefit both the caregiver and the company? The key here is educating and training department heads and managers to understand the caregiver burden, respond with empathy and also provide a supportive community. The goal is for caregivers to no longer feel isolated or marginalised while being able to meet job performance requirements and family caregiving demands. This new-found sense of community will also lead both groups to recognise insights that help to enhance the existing programmes.
Challenging to companies is the fact that rare diseases vary widely in severity, progression and care needs. With that in mind, employers should create flexible frameworks that enable individualised solutions. Examples might include personalised leave arrangements, job‑sharing options or temporary workload re-alignments.
Supporting rare disease caregivers is truly an investment in humanity. It acknowledges the complexities of these employees’ lives without sacrificing job performance. In this scenario, compassion and productivity are intertwined and allow employers to help families with critical needs during the most challenging moments of their lives.
A successful future work culture will belong to organisations that embody this truth: caregiving is a personal issue employees should share and not manage alone. It is a collective responsibility whose success rises and falls with the role played by employers. In the decades to come “corporate social responsibility” will be reimagined by companies strengthening their workforce by also contributing to a more resilient, compassionate world.
References
[1] https://www.hbs.edu/bigs/caregiving-can-show-measurable-gains?utm_source=copilot.com
We are delighted to welcome Paul Kidwell as a regular contributor and supporter of the caregiver voice throughout 2026. For more information on Paul’s podcast check out insickness.org
