On this rare day take time to listen to a patient story and decide what you will do to make a difference to 300 million people living worldwide with a rare disease #DareToThinkRare
On 29 February 2020 – a rare day indeed – we mark the thirteenth international Rare Disease Day coordinated annually by EURORDIS.
On and around this day hundreds of patient organisations from all over the world hold awareness-raising activities. People with rare diseases and their communities will be sharing their stories of rare disease.
The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
It’s a day for the whole rare disease community to unite. But all year round M4RD endeavour to share the lived experience with medical students and doctors in training, who may not be aware of the impact of rare diseases. Check out these experiences of people with acromegaly of being diagnosed in an OSCE; or Sarah’s 11 years growing up without a diagnosis; or Kay’s story of losing two children with a rare disease.
Building awareness of rare diseases is so important because 1 in 20 people, worldwide, will live with a rare disease at some point in their life.
Rare is Many
There are 300 million people are living with a rare disease worldwide.
The key messages for Rare Disease Day 2020 are:
- Rare is many worldwide.
- Rare is strong every day.
- Rare is proud everywhere.
Read patient stories and share the official videos here.
Equity is Needed
Despite rare diseases affecting such a large global population and all demographics of people, there remains inequity for people living with a rare disease. Countless patient stories demonstrate that everything from the diagnostic process, access to research and support can entirely depend on the attitude of the doctor they have. Positive stories often describe the perseverance of doctors who won’t stop until they find an answer for their patients. M4RD is working towards a future where all doctors know the relevance of rare disease to everyday medicine and feel equipped to manage their patients with rare diseases.
3 ways YOU can make a difference
- Organise your own rare disease event
- Highlight a rare disease at your speciality conference
- Organise peer to peer teaching about rare disease
Mark Holland Metabolic Unit at Salford Royal
Our own Clinical Ambassador, Dr Gisela Wilcox, is pictured above at the Rare Disease Day stand representing the Mark Holland Metabolic Unit at Salford Royal alongside 5th year medical student Rachel Southern-Thomas who has just completed a 4 week placement with them. They also had two patients from the Pompe community in attendance to give the patient perspective.