While a single rare disease may affect a small number of people, unfortunately it’s not rare to have one.
In fact, it’s estimated that rare diseases affect 3.5-5.9% of the global population (or 300 million people).
Yet because of the rarity and scattered population distribution of each disease, information and expertise is scarce. This makes them much more challenging than common diseases to address.
As a result, those living with a rare disease face inequities when it comes to accessing diagnoses, healthcare and treatments. On top of this, they experience many social challenges like stigma, discrimination and social marginalisation.
But things are changing. Thanks to growing global awareness-raising efforts – much of which has stemmed from the Rare Disease Day campaign – these challenges are slowly being addressed.
It’s a long road ahead, though, and one that requires a huge amount of support to achieve true equity for the rare disease community.
What is a rare disease?
There are estimated to be over 6,000 rare diseases that are chronic, progressive, degenerative, disabling and frequently life-threatening. Seventy-two percent of them
A disease is considered rare when it affects fewer than 1 in 2,000 people. are genetic and 70% of genetic rare diseases start in childhood.
Sadly, no cure exists for most cases, and few treatments are available.
People living with rare diseases are a vulnerable and neglected population. They’re disproportionally affected by all sorts of challenges that make accessing healthcare difficult and that impact hugely on their quality of life.
How does Rare Disease Day help?
The point of this globally coordinated campaign is to raise awareness among the public and decision-makers about rare diseases and their impacts on patients’ lives.
Taking place on the last day of February every year, its mission is to generate change and improve the lives of those living with rare disease, their families and carers.
Specifically, it aims to achieve equitable access to diagnoses, treatment, health and social care, and social opportunity for rare disease sufferers.
Set up by EURORDIS (Rare Diseases Europe) and its Council of National Alliances in 2008, Rare Disease Day now includes 65+ national alliance patient organisation partners.
Alongside its partners, it’s built a growing community of rare disease sufferers, their families, carers, and many others dedicated followers from all walks of life.
Ten years on from its creation, it provides a focal point that enables rare disease advocacy work to progress on local, national and international levels.
Join the movement
Everyone from clinicians, researchers, medical communicators, other healthcare professionals, or any member from the public for that matter, can help raise awareness and make changes for rare disease sufferers. Here are some of the ways…
Start a conversation
Chat with colleagues, family and friends about the issue, or share an experience or story about someone living with a rare disease. Highlighting stats or challenges those living with rare diseases face, can also be powerful.
Download campaign materials
There are all sorts of helpful campaign materials available to the public. These include social media graphics, videos, posters, badges, banners, info packs and toolkits. Choose what works best for you so you can help raise awareness, your way.
Find an event near you – or create one
Sign your organisation up to the cause
Share your organisation’s support for the campaign by joining 1,400 others to become a Rare Disease Day friend.
There are many other ways you can help, whether it’s advocating to policymakers, encouraging rare disease patients to share their stories, or generating media attention on a Rare Disease Day initiative in your community.
For more information on getting involved, visit rarediseaseday.org./downloads.