Rare Disease Day 2016: making the voice of rare diseases heard

Contributed by EURORDIS.   On 29 February 2016, people living with or affected by a rare disease, patient organizations, politicians, carers, medical professionals, researchers and industry will come together to celebrate the ninth annual Rare Disease Day.  

A patient-led campaign, organizations in over 80 countries and regions are participating in Rare Disease Day 2016 by holding their own local events.  Everybody can get involved in Rare Disease Day 2016. You can also find your local events here.

The Rare Disease Day 2016 poster features Yuliya, who is living with type 2 spinal muscular atrophy and the official 2016 video is available too.  

2016 theme and slogan

The Rare Disease Day 2016 theme ‘Patient Voice’ recognises the crucial role that patients play in voicing their needs and in instigating change that improves their lives and those of their families and carers.

The Rare Disease Day 2016 slogan ‘Join us in making the voice of rare diseases heard’ appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.

Patients and patient advocates use their voice to bring about change that:

• Ensures politicians continuously and increasingly acknowledge rare diseases as a public health policy priority at both national and international levels.
• Increases and improves rare disease research and orphan drug development.
• Achieves equal access to quality treatment and care at local, national and European levels, as well as earlier and better diagnosis of rare diseases.
• Supports the development and implementation of national plans and policies for rare diseases in a number of countries.
• Helps to reduce isolation sometimes felt by people living with a rare disease and their families. 

Rare Disease Day amplifies the voice of rare disease patients so that it is heard all over the world.  

The history of Rare Disease Day

Rare Disease Day was launched by EURORDIS and its Council of National Alliances in 2008. Held on the last day of February each year, a rare day, it seeks to raise awareness of the impact that rare diseases have on the lives of patients and those who care for them. What began as a European event quickly became international in scope, with participants from more countries joining each year.

Since Rare Disease Day began, thousands of events have been held throughout the world, reaching hundreds of thousands of people. The political momentum resulting from the Day has also served advocacy purposes, contributing to the advancement of EU policies on rare diseases and to the creation of national plans for rare diseases in a number of EU Member States. Visit RareDiseaseDay.org.