The Uptake team are fully supporting World Rare Disease Day, “Show Your Rare”, with our ongoing research, charity work and team events.

Rare Diseases Day: Thursday 28th February

What is rare diseases day?

  • Objective to raise awareness amongst the general public and decision makers about rare diseases and their impact on patients’ lives.
  • Campaign primarily to target the general public – also targets policy makers, public authorities, industry representatives, researchers, health professionals and anyone with a genuine interest in rare diseases.

Why?

  • Rare diseases are important because 1 in 20 people will live with a rare disease at some point in their life.
  • Majority of rare diseases go undiagnosed. Rare disease day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

Who?

  • Rare Diseases Day are down to hundreds of patient organisations all over the world who work on a local and national level to raise awareness for the rare disease’s community in their countries.
  • First launch by EURORDIS and its council of national alliances in 2008
  • Thousands of events have taken place throughout the world reaching hundreds of thousands of people, resulting in a great deal of media coverage.

Where?

  • The campaign started out as a European event and have progressively become a world phenomenon – participation in over 90 countries all over the world.

When?

  • The first Rare Diseases Day was celebrated in 2008 on the 29th February on a rare
  • Ever since Rare Diseases Day takes place on the last day of February, a month known for having a rare number of days.

What is a rare disease?

  • A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
  • There are over 6000 existing rare diseases.
  • One rare disease may only affect a handful of patients in the EU, as many as 30 million people may be affected.
  • 50% of rare diseases affect children
  • 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral)
  • Characteristics of rare diseases – Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary for disease to disease and from patient to patient suffering from the same disease.
  • Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis – delaying treatment.
  • Misdiagnosis of rare diseases disabling the patient’s quality of life due to chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.
  • Often there are no existing effective cures, which adds to the high level of pain and suffering endured by patients and families.
  • Common problems faced:
  • Lack of scientific knowledge and quality of information on a rare disease results in delay of diagnosis.
  • Need for appropriate quality health-care engenders inequalities and difficulties in access to treatment and care.
  • Lack of treatment often results in heavy social and financial burdens on patients.

How can things change?

  • Enormous progress is being made every day.
  • Ongoing implementation of a better comprehensive approach to rare diseases has led to the development of appropriate public health policies. – Increase of international cooperation in the field of clinical and scientific research and sharing of scientific knowledge about all rare diseases.
  • Advances have led to the development of new diagnostic and therapeutic procedures.

 Rare diseases day in the United Kingdom:

United Kingdom has engaged in Rare Diseases Day since its beginning in 2008.

Celebrations have spanned in up to 13 cities.

Rare diseases day 2018 – children took over a rare disease’s publication for one of its issues to produce a more accessible, informative and engaging publication of children on rare diseases.

Schools got involved on rare diseases day – dress up days etc.

https://www.rarediseaseday.org/

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