What is Rare?
The definition of a rare condition differs across the world, with the WHO defining it as 65 in 100,000 people; the USA 60 in 100,000 people and the EU and UK 50 in 100,000 people (which breaks down to 1 in 2000 people). The number of identified rare conditions varies according to which study you read, but a recent study by US company RareX (2022) estimated the number of identified rare conditions to be over 10,000. Latest statistics show that about 3.5million people in the UK (that’s 1 in 17 people or approximately 6% of the population) will be affected by rare disease at some point in their lives.
That’s a lot of people, proving the catchphrase coined by Medics4Rare Disease, ‘Individually Rare, Collectively Common’ to be extremely accurate.
The Issue
‘Individually Rare, Collectively Common’ - rare disease could touch any one of us, or a member of our family, at any point in time. It’s in all of our interests to do something positive about it.
Unemployment rates among adults with rare conditions tend to be higher than the general population, but exact figures can vary widely depending on the specific condition, its severity, and other factors. Here's what we generally know:
Employment rates for people with rare conditions are typically lower than the general population.
Studies have shown that unemployment rates for rare adults can range from 20% to as high as 40% or more, depending on the condition.
Underemployment (working below one's skill level or part-time involuntarily) is also a significant issue for many adults with rare conditions.
The employment situation can vary greatly depending on the specific rare condition, its symptoms, and how it affects daily functioning.
Factors such as disease progression, need for frequent medical appointments, and workplace accommodations can all impact employment status.
Some rare conditions may have higher unemployment rates than others, particularly those that cause significant physical limitations or cognitive impairments.
Being a carer for someone with a rare condition can directly affect you in all of the above ways.
What Employers are Missing
Whilst there can be the need to make some accommodations for employees who have a rare condition or a disability, research has shown there to be huge advantages, not just for the employer but for society as a whole. Key benefits include:
1. Diversity and inclusion:
- Enhances workplace diversity
- Promotes a culture of inclusion and acceptance
- Improves company reputation and brand image
2. Unique perspectives:
- Brings diverse viewpoints to problem-solving
- Encourages innovation through different life experiences
- Can lead to more creative solutions and ideas
3. Increased loyalty and productivity:
- Often highly motivated and loyal employees
- Tend to have lower absenteeism rates
- Can increase overall team productivity
4. Expanded talent pool:
- Access to a wider range of skilled candidates
- Can fill skill gaps in the workforce
- Helps address labor shortages in certain industries
5. Customer relations:
- Better understanding and service for customers with rare or disabling conditions
- Improves accessibility of products and services
- Can lead to expanded market reach
6. Tax benefits and incentives:
- Many countries offer tax credits for hiring people with disabilities, which can include rare conditions
- Potential grants or subsidies for workplace accommodations
7. Improved workplace adaptability:
- Accommodations often benefit all employees
- Leads to more flexible and accessible work environments
8. Enhanced problem-solving skills:
- Rare employees often develop unique problem-solving abilities
- Can bring innovative approaches to workplace challenges
9. Positive impact on company culture:
- Fosters empathy and understanding among all employees
- Can lead to improved communication skills company-wide
10. Compliance with legal requirements:
- Helps meet equal opportunity employment regulations
- Reduces risk of discrimination claims
11. Social responsibility:
- Contributes to social inclusion and equality
- Demonstrates corporate social responsibility
12. Cost-effectiveness:
- Studies show accommodations are often low-cost or cost-neutral
- Can lead to reduced turnover and associated costs
Want examples of who is getting this right? Read Rare Employment: Part Two