Rare Disease Day - February 28
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year. Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organization partners. Rare Disease Day provides energy and a focal point that enables rare diseases advocacy work to progress on the local, national and international levels.
Though Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policymakers, industry representatives, and the general public, can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention.
By sharing your colors via social media, events, illuminating buildings, monuments, and homes, by sharing experiences online and with friends, by calling on policymakers and shining the light on people living with a rare disease, collectively we aim to change and improve lives of the 300 million people worldwide.
What is a Rare Disease?
A disease is deemed rare when it affects fewer than 1 in 2,000 people. As of writing, there are 300 million people with rare diseases, constituting 3.5% to 5.9% of the world population. 72% of these are genetic diseases.
Characteristics of Rare Diseases
Over 6000 rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.
Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patient's quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.
The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families.
History of Rare Disease Day
Created by EURORDIS and its Council of National Alliances, the very first Rare Disease Day took place in 2008 with events in 18 participating countries. EURORDIS continues to coordinate the international campaign together with a worldwide patient community. Patient organizations
from North America joined in 2009 and then all continents by 2010. National Alliances ensure the coordination of Rare Disease Day at a national level, working with patient organizations locally and often organizing a national event aimed at policy makers.
The number of participating countries has increased year on year, with thousands of events taking place on all continents on or around the month of February. In total, events have taken place in over 100 countries since 2008.
How Can Rare Disease Day Make a Difference?
Rare Disease Day raises awareness for the 300 million people living with rare disease around the world and their families and carers.
The long-term cause of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care, and social opportunity for people affected by a rare disease.
Important progress continues to be made with joint international advocacy efforts for universal health coverage (UHC), part of the United Nation’s Sustainable Development Goals (SGDs) to advocate for equitable health systems that meet the needs of people affected by rare diseases in order to leave no one behind.
Rare Disease Day is the opportunity to advocate for rare diseases as a human rights priority at the 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 2019.
How to Show Your Support for Rare Disease Day
There are over 300 million people worldwide living with a rare disease. Together across borders, and across the 6,000+ rare diseases, we work towards more equitable access to diagnosis, treatment, care, and social opportunity.
Share a photo to share solidarity with people living with rare diseases in your community! Share a photo of printed hands on social media using the hashtag #RareDiseaseDay and tag @rarediseaseday.
Get Political
Write a letter to key decision-makers about the important issues facing rare disease patients in your country and urge them to make rare diseases a priority. Advocate to policymakers that people living with a rare disease need equitable access to diagnosis, treatment, care, and social opportunity.
Invite politicians to visit your organization, attend an event you are hosting, or visit a rare disease research laboratory. Encourage your MEP to join the network Parliamentary Advocates for Rare Diseases.
Sources:
https://www.rarediseaseday.org/what-is-rare-disease-day/