Get involved in Rare Disease Day 2019!Januar 2019
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:
- Organise an event and post it to rarediseaseday.org to be part of the global community! Thousands of events take place in over 90 countries around the world.
- Out now – download the official Rare Disease Day 2019 poster featuring Filip to put up in your workplace or home and for use at your events.
- Get involved on social media:
- Upload the Facebook frame or Twibbon to your social media profile pictures
- Join a Facebook live webinar on 30 January to learn how to use digital tools to get involved in Rare Disease Day 2019
- #ShowYourRare on social media.
- Become a Friend of Rare Disease Day – companies, organisations, caregivers and researchers can Become a Friend to show support for people living with a rare disease around the world!
- Shop Rare Disease Day – buy Rare Disease Day products for your events including bags and t-shirts.
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.
More information at: Rarediseaseday.org
Eva Bearryman, Communications Manager, EURORDIS-Rare Diseases Europe