Get involved in Rare Disease Day 2019!

Filip and Alina, stars of the official Rare Disease Day 2019 poster!

The countdown has begun - Rare Disease Day 2019 is on 28 February!

Rare Disease Day is for everyone – individuals and families directly affected by rare diseases, caregivers, medical professionals, policy makers, companies, researchers and members of the general public can get involved from now until 28 February to show their support for the rare disease community:

 

Coming soon for 2019 - stay tuned for the launch of the 2019 campaign video and three new patient testimonial videos (Filip, Karlo and Lorena!), representing a variety of rare diseases and countries.

EURORDIS marks the occasion of Rare Disease Day

You can participate in events organised by EURORDIS throughout the month of February in celebration of Rare Disease Day 2019:

The EURORDIS Black Pearl Awards (12 February, Le Plaza Hotel, Brussels)

The EURORDIS Black Pearl Awards is an annual event held to recognise the outstanding achievements and exceptional work of people making a difference for the rare disease community. The Black Pearl Awards will be presented to the 2019 awardees during the ceremony. Purchase tickets to attend.

The 3rd EURORDIS Multi-Stakeholder Symposium on Improving Patients’ Access to Rare Disease Therapies (13 – 14 February, Crowne Plaza Brussels - Le Palace)

Attend to take part in discussions with patient advocates, policy makers, payers, HTA bodies, clinicians and industry executives on how to improve patients’ access to rare disease medicines. You can register to participate in the pre-Symposium webinars and purchase tickets to attend.

Rare Disease Day Policy Event at the United Nations, Second High-Level Event of the NGO Committee for Rare Diseases (21 February, UN Headquarters, New York).

Organised by EURORDIS, Ågrenska and Rare Diseases International, this event brings together 100 participants from the international NGO community, UN agencies, national governments, academic and research institutions, and the private sector, interested in collaborating to work towards the advancement of rare diseases as a global public health priority. Join the event online.

A truly global campaign

A patient-led campaign, Rare Disease Day was launched by EURORDIS and its Council of National Alliances in 2008 and brings together millions of people around the world in solidarity.

EURORDIS leads the global community in organising Rare Disease Day, which takes place on the last day of February each year to raise awareness of the impact that rare diseases have on an estimated over 300 million people around the world.

This year’s slogan is ‘Show Your Rare, Show You Care’ and the theme is ‘Bridging health and social care’; Rare Disease Day 2019 is 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.

#RareDiseaseDay

#ShowYourRare

More information at: Rarediseaseday.org


Eva Bearryman, Communications Manager, EURORDIS-Rare Diseases Europe

Page created: 21/01/2019
Page last updated: 31/01/2019
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases