Rare Disease Day 2019: bridging health and social care

Monday, 18 February 2019

On 28 February 2019, people living with or affected by a rare disease, patient organizations, politicians, carers, medical professionals, researchers and industry will come together to celebrate the twelfth annual Rare Disease Day.

A patient-led campaign, organizations in over 70 countries and regions are participating in Rare Disease Day 2019 by holding their own local events.  Everybody can get involved in Rare Disease Day 2019. You can also find your local events here.

The Rare Disease Day 2019 poster features Filip who lives with achondroplasia and his mother Alina. Filip also features as one of the three patient testimonial videos filmed for this year’s campaign.

2019 theme 

The theme for Rare Disease Day 2019 is ‘Bridging health and social care’. This 12th edition of Rare Disease Day will focus on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day. 

Rare Disease Day 2019 is thus an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.

The history of Rare Disease Day

Rare Disease Day was launched by EURORDIS and its Council of National Alliances in 2008. Held on the last day of February each year, a rare day, it seeks to raise awareness of the impact that rare diseases have on the lives of patients and those who care for them. What began as a European event quickly became international in scope, with participants from more countries joining each year.

Since Rare Disease Day began, thousands of events have been held throughout the world, reaching hundreds of thousands of people. The political momentum resulting from the Day has also served advocacy purposes, contributing to the advancement of EU policies on rare diseases and to the creation of national plans for rare diseases in a number of EU Member States. Visit RareDiseaseDay.org.

Rare Disease International 5th Annual Meeting

In the lead up to Rare Disease Day, Rare Diseases International will hold its 5th Annual Meeting on 20th February 2019 an interactive session whose aim is to understand, discuss, and get further involved in Rare Disease International’s advocacy. This event will also be an opportunity to learn from and share with other patient advocates and rare disease stakeholders from around the world.

This event will be live streamed. If you would like to follow the proceedings you can find it here.