Ipainia conmemorates the 2016 World Rare Disease Day

Various micronations celebrated the 2016 World Rare Disease Day with stamp issues and other activities.


SOURCE: Rare Disease Day Website

2016 marks the ninth year that the international rare disease community celebrates Rare Disease Day.

On 29 February 2016, people living with or affected by a rare disease, patient organisations, politicians, carers, medical professionals, researchers and industry will come together in solidarity to raise awareness of rare diseases.

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 the lives 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 that 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. […]

2016 WORLD RARE DISEASE DAY IN MICRONATIONS

From the forum of the Organization for Cooperation and Development of Micronations, the micronation of Timeria promoted the commemoration of this day, several micronations published in their news and issued postage stamps.

@Timeriagov: Philatelic Issue – Rare Disease Day goo.gl/rWp6Xm (Article in Spanish)

@RadioMoriel: correosdemoriel.blogspot.com.ar (In Spanish) for being today the Rare Disease Day, a stamp was created, in the stamp Victor Mkcusick -medial geneticist- is featured.

@GovAntares: Today, 28 februare, is the Rare Disease Day.

Remember to visit http://www.rarediseaseday.org/ in order to help.

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