World Rare Disease Day: Rethinking Rare Diseases in 2022

Life after the Covid-19 outbreak will never be the same. In fact, the pandemic has left many vulnerable, including those living with rare diseases. With so many Covid-19 adjustments taking place since 2020, patient care protocols have been revised to minimise risk for patients and healthcare workers. People living with rare diseases (PLWRD) have taken a back seat to reprioritise these challenges.

In South Africa alone, there are approximately 4.1 million rare disease patients. People living with rare disease, lack public awareness which results in greater risk of social exclusion and discrimination. The pandemic has left the rare disease community and their family members uncertain and anxious with little information on how their treatment and support services will be available.

Today, on World Rare Disease Day, we are shining the light on a community that is often misunderstood and often underrepresented. One in 15 will contract a rare disease at some point in their lives.

Now, more than ever, individuals with rare diseases are more vulnerable due to the pandemic. Rare diseases are often life-limiting and associated with increased likelihood of premature mortality or a decreased quality of life.

While the term may be ‘rare disease’, they are not as rare as we think. In fact, there are over 7000 known rare diseases that affect 400 million people worldwide.

Key statistics of rare diseases to know: 

  • Affects between 3.5 to 5.9 percent of the population
  • 72 percent of rare diseases are genetic
  • 70 percent of genetic rare diseases begin in childhood
  • There are no cures for most diseases and few treatments are available

So how can we help?

Many people think the term ‘rare’ means the impact of rare disease only affects a small portion of the population. However, the numbers are higher than we think. Here’s how we can leave no one behind amid a pandemic:

  • Be part of the conversation: Share information on social media. Spreading the word in your community can bring awareness to people living with rare diseases. The more voices behind this initiative, the more we can do to ensure social inclusion and better healthcare support.
  • Join a PLWRD community: You’ve completed the first step by reading this article. The next is to join any events taking place near you. You can even start your own event to raise awareness or donations.
  • Connect with rare disease patients: Social media has become a great tool when connecting with others. Using these platforms, can connect you with people from around the global and collectively amplify your voice.