Rare Disease Day is celebrated today – February 28th. The theme for 2022 is shining a light on untold stories, and we want to play our part in this.

There is much that people don’t know about rare diseases and the impact that having one can have on a person. From social stigma to being kept out of employment, the potential psychological detriment is palpable, but there is much we can do to learn more and understand some fundamental realities.

What constitutes a rare disease?

Rare Disease UK says a rare disease is one that affects fewer than 1 in 2,000 people within the general population. As of 2020 there were over 6,000 known rare diseases, and new conditions are being identified on a regular basis. The majority of rare diseases have no effective treatment.

1 in 17 people will be affected by a rare disease at some point in their lives. You can find out more about living with a rare disease here: https://www.eurordis.org/living-with-a-rare-disease

How can having a rare disease impact employment?

The European Patients’ Forum report on Equal Treatment for Patients in Education and Employment found that 33% of rare disease survey ‘respondents reported that a patient in their family had to reduce or stop professional activities due to the disease; an additional third of respondents reported that one member in the family had to reduce or stop professional activities to take care of a relative with a rare diseases.’

It also concluded that ‘for patients with various chronic diseases, for example the rare disease community, parents, grandparents, siblings, partners, and other family members face huge challenges in regards to school, employment and other daily life areas. Patients’ health status and their difficulties to remain at work may affect the working situation of their family carers. Caring may lead to difficulties balancing paid work with care responsibilities. Carers may give up on work due to their caring activities, or may lose their job, and may need support (including financial).’

Why do we need to talk about this?

People who receive a diagnosis of a rare disease sometimes find themselves

  • hiding their disease from their co-workers and managers
  • pushed out of work due to unsupportive environments
  • underemployed because of people’s perception biases impacting job and career advancement opportunities
  • reliant on financial and/or health-related social support
  • in need of care from relatives who then have to scale back on their own work
  • struggling with their mental health due to all of the above

There are significant losses a workplace environment also experiences when talented people with rare diseases leave because of the kind of challenges described above:

  • a loss of technical knowledge held by the colleagues who leave
  • an undermining of the culture of inclusion that so many organisations are trying to build and uphold

So, what next?

Organisations can ask themselves:

  • Are our managers equipped to hold conversations with sensitivity and empathy? Are we, or they, approachable?
  • Have we provided our people with training in the fundamentals of disability awareness?
  • Do we clearly understand how to improve levels of inclusion at our organisation?
  • What information do we need to excel in creating a culture of inclusion and belonging?

Sometimes the simplest support we can provide is just to listen to people.

Being heard and understood goes a long way toward building trusting relationships. And for people to thrive at work they need to be able to talk about their needs, to openly request time off for medical and psychological support and seek adjustments that might need to be made in the workplace.

Learn more about rare disease support and advocacy here: