National document on rare diseases to be drafted

April 8, 2019 - 9:14

TEHRAN — At numerous requests put in by patients suffering from rare diseases Iranian Health Minister Saeed Namaki has tasked Tehran University of Medical Sciences with devising a national document on rare diseases, Fars news agency reported on Sunday.

Patients with rare diseases have launched and signed a petition calling for drawing up a national document on rare diseases on the occasion of the Rare Disease Day, February 28.

Drafting and completing the national document started since the beginning of the current Iranian calendar year (March 21) in a collaboration between Tehran University of Medical Sciences and Rare Diseases Foundation of Iran.

Public relations officer at Rare Diseases Foundation of Iran, Shakiba Pordel, has explained that preparing the document will help in promoting plans for treatment and prevention of rare diseases.

Since last year (March 2018-March 2019) Rare Diseases Foundation of Iran has succeeded in identifying 300 kinds of rare diseases, Pordel added.

Drawing up the plan would also set the scene for providing patients with such diseases with better mental and physical care.

Rare Disease Day

A rare disease, also referred to as an orphan disease, is any disorder that affects a small percentage of the population. Although the disease may be rare, patients and families share a common struggle.

Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

European Organization for Rare Diseases established this day in 2008 to raise awareness for unknown or overlooked illnesses. According to (EURORDIS), treatment for many rare diseases is insufficient, as are the social networks to support individuals with rare diseases and their families; furthermore, while there were already numerous days dedicated to sufferers of individual diseases (such as AIDS, cancer, etc.), there had previously not been a day for representing sufferers of rare diseases.

The theme for Rare Disease Day 2019 is 'Bridging health and social care'. Focusing on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.

Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.


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