Statement for Rare Disease Day

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Rare Diseases Day

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

The first Rare Disease Day was celebrated in 2008 on 29 February, a ‘rare’ date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, a month known for having a ‘rare’ number of days.

RARE DISEASES

A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. One rare disease may affect only a handful of patients in the EU (European Union), and another may touch as many as 245,000. In the EU, as many as 30 million people may be affected by one of over 6000 existing rare diseases.

  • 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
  • 50% of rare diseases affect children.

Characteristics of rare diseases

Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.

Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.

The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families. (RARE DISEASE DAY)

Statement for Rare Disease Day

The vision of the Sustainable Development Goals is a world in which no one is left behind, including people who suffer from rare diseases. Just because a disease affects a small number of people does not make it irrelevant or less important than diseases that affect millions.

Rare diseases present fundamentally different challenges from those of more common diseases, especially for diagnosis. The small number of patients, the logistics involved in reaching widely dispersed patients, the lack of validated biomarkers and surrogate end-points, and the lack clinical expertise and expert centres all present significant barriers.

Medical expertise for each of these diseases is a scarce resource. Fragmented disease knowledge makes it critical that investments in research go hand-in-hand with investments in dedicated infrastructure and international networks such as biobanks, registries and networks of expertise. Where needed, these networks can also provide opportunities to train health professionals on rare diseases.

WHO’s top priority is to support countries on the path towards universal health coverage, with the aim of ensuring that all people can access the health services they need, when and where they need them, without facing financial hardship. This includes access to diagnosis and treatment for people who suffer from rare diseases. Through the Fair Pricing Forum, WHO is seeking to foster dialogue between regulators, insurers, pharmaceutical companies and patient groups to ensure sustainable access to medicines, including orphan drugs. We welcome further discussions with the rare diseases community about how we can strengthen cooperation to ensure people with rare diseases can access the health services they need.

Thank you for your commitment to raising the awareness of rare diseases and contributing to a world in which no one is left behind. (Statement by Dr Tedros Adhanom Ghebreyesus, WHO Director-General)

WORLD HEALTH ORGANIZATION

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Sagun's Blog is a Public Health Information sharing platform created by Sagun Paudel. The main purpose of this blog is to share public health updates.

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