[27 February 2015] Rare Disease Day takes place on the last day of February each year. The theme of this year’s campaign is “Living with a Rare Disease”, focusing on the daily lives of patients, families and caregivers who are living with a rare disease. The slogan for Rare Disease Day 2015 is “Day-by-day, hand-in-hand”.
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The campaign was launched in 2008 by EURORDIS (Rare Diseases Europe) and has since become a major global event. This year participants in over 80 countries and regions are expected to get involved, organising conferences, festivals, dinners, walks, media campaigns, concerts and much more.
The IBTA has been a member of EURORDIS since 2006 and we are once again supporting the Rare Disease Day campaign. We recognise that brain tumour patients face many of the same day to day challenges as those living with a rare disease:
How to find a diagnosis?
How to access treatments?
How to find appropriate expertise?
How to work with a team of caregivers, such as doctors or physical therapists, and other healthcare professionals and coordinate care between them?
How to identify and access social services?
How to manage the economic burden of living with a rare disease?
How to ensure the well-being of the entire family and balance priorities?
Find out more about Rare Disease Day here.