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Rare Disease Day – 28 February 2023

28 février 2023
Nicole Gregoire
Aucun commentaire
Catégories: Anglophones et anglophiles
Mots-clés: awareness, carers, change, equity, opportunities, rare diseases

Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.

This year, our focus is equity. Everyone deserves equitable opportunities and access to health care but people living with a rare disease are more likely to experience treatment inequality, misdiagnosis and isolation. For #RareDiseaseDay 2023 on February 28, let’s light up in solidarity with over 300 million people living with a rare condition and share our colours!

Source: Text & Image: https://www.rarediseaseday.org/

Rare Disease Day – 28 February

28 février 2018
Nicole Gregoire
Aucun commentaire
Catégories: Anglophones et anglophiles
Mots-clés: awareness, families, orphan disease, rare diseases

28 February 2018 will be the eleventh international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities.

What is a Rare Disease?
A rare disease, also referred to as an orphan disease, is any disorder that affects a small percentage of the population. Although the disease may be rare, patients and families share a common struggle

Theme for 2018 
In 2018 the theme is Research. Research is key. It brings hope to the millions of people living with a rare disease across the world and their families.

Source: Text & Image: www.rarediseaseday.org

Rare Disease Day – 28 February

28 février 2017
Nicole Gregoire
Aucun commentaire
Catégories: Anglophones et anglophiles
Mots-clés: awareness, CORD, organisation, orphan diseases, population, rare diseases, research

What Rare Disease Day is about
28 February 2017 marks the tenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the theme of research.

What is a Rare Disease?
A rare disease, also referred to as an orphan disease, is any disorder that affects a small percentage of the population. Although the disease may be rare, patients and families share a common struggle.

Living with a Rare Disease, Day-by-day,  Hand in hand Theme for 2017
Research is key. It brings hope to the millions of people living with a rare disease across the world and their families.

Rare Disease Day in Canada
Patient organisations in Canada have engaged in Rare Disease Day since its first year in 2008, arranging gala dinners and exchanges between researchers and patients, as well as regional events across Canada.

Highlights in 2016 included an event in Ontario where people blew over 7000 bubbles to represent the total number of rare diseases. In Ajax, there was also a rare disease Expo, which offered potential solutions to create inclusive, accessible communities.

The Canadian National Alliance, the Canadian Organization for Rare Disorders (CORD), serves as the voice for the estimated 1 in 12 Canadians affected by a rare disease. They can be contacted directly to help you find a patient organisation locally which may have more information about a specific rare disease or disorder.

Source: Text & Image: www.rarediseaseday.org  https://globalgenes.org/world-rare-disease-day

Rare Diseases Day – 29 February

28 février 2016
Nicole Gregoire
Aucun commentaire
Catégories: Anglophones et anglophiles
Mots-clés: awareness, EURORDIS, national plans and policies, rare diseases

logo-rare-disease-dayRare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

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 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 political momentum resulting from Rare Disease Day also serves advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

The campaign started as a European event and has progressively become a world phenomenon, with the USA joining in 2009 and participation in over 80 countries throughout the world in 2015. Hundreds of cities continue to take part in Rare Disease Day and we hope even more will join in 2016. Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.

Source: Text & Image: EURORDIS