The Rare Disease Day 2015 theme Living with a Rare Disease pays tribute to the patients, families and caregivers who are impacted by rare diseases. The slogan Day-by-day, hand-in-hand evokes the solidarity between families, patient organisations and communities. 28 February 2015 marks the eighth Rare Disease Day and preparations are already getting underway in many areas.
The complex nature of most rare diseases, coupled with limited access to treatment and services, mean that family members are often the primary source of solidarity, support and care for people with rare diseases. Patient organisations can provide information, experience, resources and support for people Living with a Rare Disease.
Day-by-day, hand-in-hand, patients, families and organisations are joining forces to find common solutions, advocating for treatments, care, resources and services in solidarity with all stakeholders – caregivers, healthcare professionals, specialised social services, researchers, pharmaceutical companies, policy makers, and regulatory bodies.
For Rare Disease Day 2015 let’s raise awareness for the daily challenges of Living with a Rare Disease.
Visit the Living with a rare disease section of the EURORDIS website to learn more about living day-by-day, hand-in-hand with a rare disease and the ways in which patients and families are meeting their challenges.
Created and coordinated by EURORDIS and organised with rare disease National Alliances around the world, the Rare Disease Day campaign raises awareness amongst the general public, policy makers, public authorities, industry representatives, researchers, and health professionals. Participation continues to grow each year since the first Rare Disease Day was held in 2008. Last year, hundreds of patient organisations in 84 different countries and regions worldwide got involved!
This Rare Disease Day, raise and join hands for people Living with a rare disease. Day-by-day, hand-in-hand we can make a difference!