This Rare Disease Day join hands with the community worldwide to make the patient voice heard
On 29 February patients around the world will celebrate the ninth annual Rare Disease Day. People living with a rare disease and their families, patient organisations, politicians, carers, medical professionals, researchers and industry will come together in solidarity to raise awareness of rare diseases. It will also be a day of reflection to acknowledge how much more can be achieved if we work collectively.
This is a patient-led campaign which was started in 2008 by patient organisations which included mostly European countries. It has now expanded cumulatively, with over 80 countries and regions participating in Rare Disease Day 2016. This year Uganda and Indonesia are making their debut among others, by holding their own local events.
This year's official video for Rare Disease Day (above) has been received enthusiastically, with more than 13,000 views on youtube! This video, now available in 33 languages, celebrates the special moments in the lives of people living with a rare disease.
This years’ theme ’Patient Voice” recognises the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers. This years’ 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. stage.
It’s not too late. Participate in the Rare Disease Day events. Make your voice heard. Help amplify the voice of the patients.
More on Rare Disease Day
National Institute of Health (NIH) in the United States has released its strategic fiscal plan for 2016-2020 which has placed a heavy focus on funding research and development in the field of rare diseases. This strategic plan was prepared at the request of the United States Congress, wherein NIH will use this framework to turn scientific discoveries into better health. 
A study published in Transfusion and Apheresis Science evaluates the cost of the treatment of haemophilia A and B patients in Iran. These expenses are paid by the national health systems in Iran. The authors identified patients diagnosed with Factor VIII and IX deficiency using the national registry database of Ministry of Health in Iran. They then identified the direct medical costs for these patients which amounted to USD 15,130. Most of this amount was allocated to medication, followed by therapeutic services and diagnostic service, which was only 1% of these expenses. 
Megan Fookes from Rare Voices Australia has been awarded the prestigious Medal of the Order (OAM) on Australia Day. This prestigious honour is awarded to Australians who have dedicated their life to the betterment of lives of Australians. Megan Fookes has been an active advocate for patients suffering from rare diseases since she was 23 years old. She has a personal connection with rare disease as she cares for her child who lives with Fabry Disease. Megan served on the Board of Fabry International Network (FIN), and continues to volunteer as Director at Fabry Australia. She is also appointed as Advisor in Policy & Stakeholder Relations at Rare Voices Australia, and has roles on many local, national and international committees for rare disease. Megan has dedicated the award to her late father -who lived with Fabry Disease, and to all adults, children and families who are doing their very best living with rare diseases.
