Rare Disease Day 2022: Equity for People Living with a Rare Disease

Overview

Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year. Rare Disease Day is the official international awareness-raising campaign for rare diseases which takes place on the last day of February each year.

Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, 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.

Objective

The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day was launched by EURORDISRare Diseases Europe and its Council of National Alliances in 2008.

Facts

• There are over 300 million people worldwide living with a rare disease.
• As a vulnerable and neglected population they are disproportionately affected by stigma, discrimination and social marginalization, within their social environment as well as society at large.
• Together across borders, and across the 6000+ rare diseases we work towards more equitable access to diagnosis, treatment, care and social opportunity.
• There are more than 25 million people affected by rare diseases, and children are the large majority. Many children with rare diseases face bullying and lack of peer acceptance.
• 72% of rare diseases are genetic
• 70% of those genetic rare diseases start in childhood.

Rare diseases day 2022: #LightUpForRare

This year for Rare Disease Day 2022 we are calling on everyone to help the rare disease community be united by a chain of lights across the world. In light of COVID-19 this chain will serve as one of the symbolic ways to break isolation globally.

Anyone can contribute whether you are a person living with a rare disease, an individual,a family member, a healthcare professional, an industry representative, or a public official. We encourage you to find a local or national patient organisation to help you spread the word and raise awareness for people living with a rare disease.

Source of info: https://www.rarediseaseday.org/ #RareDiseaseDay