(Campaign Video)
Rare Disease Day raises awareness for the 300 million people living with rare diseases worldwide and their families and carers.
Rare diseases are those that affect fewer than 1 in 2000. It is thought that the main challenges faced by those living with rare diseases are:
The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis.
The need for appropriate, quality health care engenders inequalities and difficulties in access to treatment and care, which often results in heavy social and financial burdens on patients.
Owing to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition, symptoms differ not only from disease to disease but also from patient to patient suffering from the same disease.
Research needs to be international to ensure that experts, researchers and clinicians are connected
Rare Disease Day is the opportunity to advocate for rare diseases as a human rights priority at local, national and international levels as we work towards a more inclusive society.
Rare Disease Day is a great example of how progress continues to be made, with events being held worldwide each year. Beginning in 2008, when events took place in just 18 countries,
Rare Disease Day has taken place every year since, with events being held in over 100 countries in 2024.
The Pituitary Foundation are marking Rare Disease Day by sharing stories from their community, to highlight the impact of rare diseases and the great ways the community get involved to raise awareness of rare conditions.
As part of this, they are sharing stories from fundraisers, volunteers, endocrine nurses and more.
There are also some stories from people who have Ehlers-Danlos Syndrome. Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Connective tissues provide support for skin, tendons, ligaments, blood vessels, internal organs and bones.
Katherine and Alyssa have both shared their stories to support others. You also connect with others with EDS through the Rare Connect Community. Here you can read updates, hear other people's stories, see announcements relating to EDS and access relevant resources.
Rare Disease Links can be found below, which include stories of those living with a broad range of rare conditions, events taking place throughout the world and downloads that you can share on social media:
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