Redefining Rare — Azhar Talib, Bruce Lim & Edmund Lim

By CodeBlue | Posted on

In Malaysia, there is still no official definition for a rare disease.

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Rare Disease Day 2020 was on Saturday 29 February, the rarest day of the year.

This special day aims to draw attention to rare diseases and to raise awareness of what Rare really means.

It means that Rare is many

There are well over 6,000 rare diseases 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.

72 per cent of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes or are rare cancers.

70 per cent of genetic rare diseases start in childhood.

Despite all this, there is no cure for the majority of rare diseases. Many, Malaysia included, go undiagnosed or misdiagnosed.

In Europe, a disease is defined as rare in Europe when it affects fewer than 1 in 2,000 people. In Malaysia, there is still no official definition for a rare disease.

Building awareness of rare diseases is so important because one in 20 people will live with a rare disease at some point in their life.

There are over 300 million people around the world living with a rare disease.

Rare diseases are a serious public health concern and an international priority, but unfortunately often very little is known about them by health professionals and the public.

On Rare Disease Day, we aim 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.

It means that Rare is strong

People affected by rare disease will mostly receive symptomatic and palliative care because there are very few curative or disease modifying treatments. Often, relatives will have to stop working and become full-time carers.

Rare Disease Day encourages us to continue finding ways to work together. We also connect across borders and diseases to raise awareness and advocate for equity. And three rare disease communities are coming together for Rare Disease Day 2020 in Malaysia: Spinal Muscular Atrophy or SMA (Persatuan WeCareJourney), Primary Immunodeficiencies ( Persatuan Pesakit Imunodifisiensi Primer Malaysia, MyPOPI), and Prader-Willi Syndrome (Persatuan Sindrom Prader-Willi Malaysia).

It means that Rare is proud

We come together to show our support for the rare disease community with pride! Last year, thousands of events took place in a record 101 countries around the world. 2020 is also on track to be a huge success.

In Malaysia we are privileged, honoured and thankful to be supported by IKEA for Rare Disease Day 2020! Please get more information here.

Let us strive towards ensuring that people living with a rare disease get more equitable access to diagnosis, treatment, care and social opportunity.

It’s time for people living with a rare disease to have equal opportunities to realise their potential. With proper care and support, many patients can live full and independent lives.

Together, we hope that policy makers, public authorities, industry representatives, researchers, health professionals and the public, can #ChampionForRare!

Sources:

  • This is the personal opinion of the writer or publication and does not necessarily represent the views of CodeBlue.
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