Friday 29 March 2024

Tomorrow is Rare Disease day

Rare Disease Day will be particularly special this year.
2012 is a leap year,so the day will fall on February 29- a rare day for rare diseases.
For the 5th year running, hundreds of Patient Organisations from more than
40 countries worldwide, including the Malta Health Network, are organising awareness-raising activities converging around the slogan “Rare but strong together!!”
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 European Union, and another may touch as many as 245,000.
In the EU, as many as 30 million people alone may be affected by one of the existing 6,000 to 8,000 rare diseases, having an impact on patients’ lives.
 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 (progressive) and proliferative (multiplying).
 50% of rare diseases touch children.
 The focus of this year’s event is the importance of Solidarity in the field of rare diseases, to focus on the need for collaboration and mutual support amongst diseases, stakeholders and across countries.
 Patients are rare and expertise is scarce.
 Rare diseases are few and far between, but collectively they are many and people living with them all face similar challenges – so they will be stronger if they join forces.
Rare Disease Day is coordinated by EURORDIS and organised with rare disease national alliances in more than 25 EU countries.

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