World Rare Disease Day

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

This year’s theme is  “Share your colors” and “Light up for Rare”.

The goal of Rare Disease Day is to improve knowledge amongst the general public of rare diseases while encouraging researchers and decision-makers to address the needs of those living with rare diseases.

A disease is classified as rare when it statistically affects one person in two thousand. There are around 7000 rare diseases and 300 million people living with rare diseases. 72% of the diseases are genetic.

While there are many different rare diseases, they have many things in common including that they often have no cure, cannot be prevented, and have no effective treatment.

There are universal challenges faced by those living with a rare disease such as a lack of scientific knowledge and quality information on such diseases that result in delayed diagnosis.

The long-term cause of the Rare Disease Day campaign is to achieve equal access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease.

In Kenya, families with rare illnesses face extraordinary challenges. Scarcity of medical knowledge, delayed diagnosis and misdiagnosis, unnecessary treatments and surgeries, social isolation, financial hardship, lack of treatment and early death.

Kenya shall benefit from the recent adoption of the first-ever UN General Assembly Resolution on Persons Living with a Rare Disease (PLWRD).

Some of the rare diseases include; acquired hemophilia A (AHA), acquired hemophilia B (AHB), gammaglobulinemia, Goodpasture Syndrome and Pediatric Severe Combined Immunodeficiency.

BY NKATHA WAINAINA

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