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Rare Disease Day 2014: An unprecedented platform for advocacy and awareness in 84 countries!

April 2014

Man and childRare Disease Day 2014 had a record number of participation with thousands of events organised in 84 different countries around the world, all sharing the common goal of raising awareness for the challenges posed by rare diseases. Participants adapted the Rare Disease Day 2014 theme of Care to their local needs and agendas and many of the events held were designed to raise awareness amongst policy makers to underscore the need for specific rare disease policies that will facilitate access to care.

Indeed, Rare Disease Day, created by EURORDIS in 2008, is becoming a true platform for advocacy, engaging policy maker and government participation. With the spotlight this year on Care, emphasising the special equipment, medicines, diagnostics, information, social services, respite for family members, research, and other kinds of care people with rare diseases need, participants capitalised on the theme to campaign for policies and resources at the local and national levels. In Algeria, a week-long programme organised under the patronage of the Ministry of Health brought together stakeholders. Similarly, in Argentina, members of government joined hospital authorities, rare disease experts, patient groups and industry to discuss the current situation and consider future proposals. Rare Diseases Denmark conducted a survey of European Parliament candidates around rare diseases and European cooperation. Two European Member States (Belgium and Croatia) used Rare Disease Day 2014 as the occasion to hold their EUROPLAN Conferences on developing and implementing national strategies for rare diseases. In Hong Kong the first roundtable on rare disease policy took place. In Italy, the theme of Care focused around the Assistance to be given to patients and families. The Italian National Alliance UNIAMO co-organised a meeting with House and Senate representatives which led to the adoption of a Motion calling for concrete actions on rare diseases. The Motion was approved by the Chamber of Deputies and accepted by the Government.

In the former Yugoslav Republic of Macedonia, stakeholders, including representatives from the health ministry and health insurance fund, gathered for a press conference on developing a national rare disease strategy, and a conference was held focusing on building regional rare disease networks. In Malaysia, a government representative was on hand to launch the Rare Disease Day event and in the USA, a number of states held events at the State House to advocate for better care for people with rare diseases.

The annual EURORDIS Rare Disease Day Policy Event in Brussels brought further awareness and emphasis to the theme of Care and afforded a distinct opportunity to present the Patients’ Vision for Care to representatives from the European Commission and other stakeholders on three different topics: Empowering People with Rare Diseases & Their Families; Addressing Unmet Medical Needs; and Improving Patients’ Access to Quality Care and Innovative Treatments. These presentations were followed by rich discussions between panels of policy makers, scientists, patients, health professionals and members of industry, who were asked to respond to specific questions.

Rare Disease Day is held each year on the last day of February. Coordinated by EURORDIS and organised at the national level by the National Alliances to raise awareness for the numerous challenges and needs of people living with a rare disease, seven years on participation continues to grow. Rare Disease Day has become a recognised platform from which to launch awareness and advocacy campaigns for the policies and resources that people with rare diseases need. 

Louise Taylor, Communications and Development Writer, EURORDIS