PARIS, 12-2-2015 — /EuropaWire/ — To mark Rare Disease Day 2015, EURORDIS is holding a ‘Rare but Real: Talking Rare Diseases’discussion event, which will include contributions from patient representatives who have had a game-changing influence on policy and relevant decision makers.
Vytenis Andriukaitis, EU Commissioner for Health and Food Safety, will give the opening remarks at the event.
Access the event agenda via RareDiseaseDay.org to see a full list of speakers and details of subjects that will be discussed on the day.
You can get involved by:
- Attending the event in person on 24 February, 10.30 – 13.00 at the Residence Palace, Brussels. Please register for the event.
- Participating online by watching the live stream video and sending in your questions at www.eurordis.org/rareeu2015. Online participants can also join the discussion via Twitter using#RareEU2015.
Rare Disease Day 2015
The Rare Disease Day 2015 theme Living with a Rare Disease recognises the millions of families, friends and carers whose daily lives are impacted by rare diseases. The 2015 slogan day-by-day, hand-in-hand calls for solidarity as together patients, families, carers, patient organisations and healthcare professionals can participate in improving the lives of people living with a rare disease.
Over 6000 different rare diseases have been identified to date, directly affecting the daily lives of more than 30 million people in Europe alone. The complex nature of rare diseases, coupled with limited access to treatment and services, means that family members are often the primary source of solidarity, support and care for their loved ones.
Typically chronic and debilitating, rare diseases have enormous repercussions for the whole family. Living with a rare disease becomes a daily learning experience for patients, families and carers who must deal with issues such as how to access treatments, how to identify social services and how to manage the economic burden of living with a rare disease on a daily basis.
Day-by-day, hand-in-hand, together we present a united voice to advocate for the treatments, care, resources and services needed. Patients, families and patient organisations are pivotal to the momentum of creating solutions for the daily challenges of living with a rare disease in solidarity with all stakeholders – care providers, healthcare professionals, specialised social services, researchers, pharmaceutical companies, policy makers and regulatory bodies.
Internationally, Rare Disease Day offers us the opportunity to send a strong message of solidarity to the countless rare disease patients and their families throughout the entire world. There are many initiatives designed to improve the quality of life of people living with a rare disease in Europe, including the development and facilitation of access to diagnostics and treatments, the identification and improvement of access to specialised social services and services such as RareConnect, EURORDIS’ moderated multi-language online community platform that enables people living with rare diseases to break their isolation by connecting and sharing experiences.
Eva Bearryman, Junior Communications Manager, EURORDIS