Rare Disease Day was created by the European Organisation for Rare Diseases (EURORDIS) in 2008. EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals dedicated to improving the quality of life of people with rare diseases in Europe. With over 600 member organisations in 58 different countries, EURORDIS is the voice of 30 million people affected by rare diseases throughout Europe – including rare pulmonary diseases.
A rare disease is defined in the European Union as a condition affecting no more than one in 2,000 persons. Over 6,000 different rare diseases have been identified to date. Rare diseases are typically serious, chronic and disabling, and frequently affect children. Because each disease is rare and there are so many different diseases, patients and their families suffer from a lack of treatments, resources and expertise available to help them.
Held each year on the last day of February, Rare Disease Day raises awareness amongst the general public and decision-makers on the impact rare diseases have on the lives of patients and their families. Coordinated by EURORDIS, patient organisations and other rare disease stakeholders create events and activities that target the general public and also seek to raise awareness amongst policy makers, public authorities, industry representatives, researchers, and health professionals.
What started as a European event has progressively become a worldwide phenomenon, with patient organisations from over 70 countries around the world participating in 2013.
Rare Disease Day 2014 is shaping up to be the biggest awareness-raising campaign for rare diseases yet. Participants in over 80 countries and regions are expected to get involved – organising conferences, festivals, dinners, walks, media campaigns, concerts, and much more! For the first time, there is participation from organisations in Ecuador, Egypt, Jordan, Kenya, Paraguay, and Oman. The official Rare Disease Day 2014 website lists all the events taking place.
The Rare Disease Day InfoPack has lots of information on how to plan an activity. The RDD 2014 Get Involved website section explains many other ways to demonstrate support for the day, including liking the Rare Disease Day Facebook page, displaying the Rare Disease Day 2014 poster on websites or via social media, participating in the Tell Your Story campaign by sending photographs or videos, sharing the compelling video message from Rare Disease Day 2014 Ambassador Sean Hepburn Ferrer, or taking part in the annual Raise and Join Hands campaign.
Rare Disease Day 2014 puts the spotlight on Care by emphasising the different kinds of care people with rare diseases and their families need and deserve. EURORDIS is organising a Policy Event in Brussels that explores Improving Access to Rare Disease Care: The Vision of Patients. This year’s slogan “Join Together for Better Care” encourages the rare disease community to continue finding ways to work together to provide the different kinds of care that people living with a rare disease need and deserve.
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