International Rare Disease Day 2015

Fighting Blindness is happy to partner with The European Organisation for Rare Diseases – EURORDIS – and its 667 member organisations globally to celebrate International Rare Disease Day 2015 on Saturday, February 28.

This year’s theme is Living with a Rare Disease, recognising the estimated 30 million patients in Europe, as well as their families, friends and carers whose daily lives are impacted by the complexities life with a rare disease can bring.

Our slogan for 2015 – Day-by-Day, Hand-in-Hand – celebrates solidarity by stakeholder groups including, patients, patient organisations, medical professionals, scientists, industry and policy makers who advocate at international, regional, national and local levels to bring about positive change to the lives of those affected.

Raising and joining hands for Rare Diseases is the theme of our 2015 short film available in 21 languages which you can watch here:

People living with Rare Diseases are often some of the most marginalised in society. With over 6,000 different rare diseases currently identified, their varied nature, coupled with limited access to treatment and services, means that family members are often the primary source of support and care for their loved ones. In many cases families can experience significant financial burden as well as a sense of isolation and the frustration that comes with not being understood. Therefore, chronic and debilitating, rare diseases have enormous repercussions for the whole family with every day becoming a new learning experience for patients, families and carers.

Day-by-Day, Hand-in-Hand, members of EURORDIS present a united voice to advocate for the treatments, research, 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 together with all stakeholders.

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 world.

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