Rare Disease Day 2020 – 29th February

Rare Disease Day 2020 – 29th February

Rare Disease Day takes place each year on the last day of February. Rare Disease Day is a campaign dedicated to raising awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The first Rare Disease Day was celebrated in 2008 on 29 February, a ‘rare’ date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.

The Challenge

The 300 million people living with a rare disease around the world and their families face common challenges in their daily lives. As a vulnerable and neglected population they face social isolation. There are over 6000 rare diseases that are chronic, progressive, degenerative, disabling and frequently life threatening. Due to the rarity of each individual disease and scattered populations, expertise and information is scarce. In health systems designed for common diseases patients face inequities in accessing diagnosis, care and treatments.

People living with a rare disease also face discrimination at work and school. In a EURORDIS Rare Barometer survey on ‘Juggling care and daily life: The balancing act of the rare disease community’ 94% of the respondents who reported difficulties in accessing higher education declared that the disease has limited their professional choices.

Rare Diseases Infographic

Key statistics on rare diseases:

  • Over 300 million people around the world are living with a rare disease.
  • There are over 6,000 identified rare diseases.
  • 72% of rare diseases are genetic
  • 70% of genetic rare diseases start in childhood.

Research recently published in the European Journal of Human Genetics, article authored by EURORDIS-Rare Diseases Europe, Orphanet & Orphanet Ireland “Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database”.

Get involved

Rare Disease Day events are down to hundreds of patient organisations all over the world who work on a local and national level to raise awareness for the rare disease community in their countries.

Find out the events that are taking place in your country and participate!

Learn more about rare diseases through the short video part of our MEDBuzz series by Dr Susan Webb, the chair of the Programme Organising Committee for ICE 2020 here >>  https://bit.ly/2I6bv5z