Introduction

World Through My Eyes supports the second Rare Disease Asia Conference 2016, held in Kuala Lumpur, from 17 – 19 November 2016 (www.rarediseaseasia.org). Themed “Working In One Voice”, the conference will bring together stakeholders of the rare disease community in Asia and beyond. The Rare Disease Asia Conference was inaugurated in March 2015 and has since helped to catalyse advocacy efforts for rare disease patients in the region. The World Through My Eyes platform unifies The Patient Voice from various rare disease patient support organisations in Asia.

There are between 6,000 to 8,000 known rare diseases worldwide, with new disorders diagnosed and described in the medical literature on a weekly basis. Rare diseases are characterised by a wide diversity of symptoms and signs 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 patient’s 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. 80% of rare diseases are genetic in origin, while 75% of rare diseases affect children, and 30% of rare disease patients will not live to see their 5th birthday. 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.

Compared with common diseases, which affect hundreds of thousands, if not millions of people, rare diseases affect only a handful of people and as such, can lack interest or awareness among the general public and medical communities. However, when seen as a collective entity, rare diseases affect millions of people globally who, irrespective of their diagnosis, share the same aspirations and suffer the same challenges.


Patient Stories

Aaron’s story – Our boy with LSD

Aaron Ng, age 4
Lysosomal Storage Disease
Malaysia

Rare Disease

A Father’s Letter to His Son

Chu Yat Long, age 7
Mucopolysaccharidoses (MPS) Type VI
Hong Kong

Rare Disease

Rare disease, to me, is not uncommon!

Then Dji Fong
Huntington Disease
Hong Kong

Rare Disease

A Father’s Wish

Leung Tsz Yuet, age 3
Costello Syndrome
Hong Kong

Rare Disease

Hope is Darmash

Darmash Subaramaniam, age 16 (deceased)
Mucopolysaccharidoses (MPS) Type II
Malaysia

Rare Disease

I Will Take Care Of You

Wong Hoi Yau, age 2 1/2
Prader Willi Syndrome
Hong Kong

Rare Disease

Our Journey Till Now

Sugirthana Karthick, age 8
Rett Syndrome
India

Rare Disease

The Fighter

Siti Safura binti Jaapar, age 33
Spinal Muscular Atrophy Type 2
Malaysia

Rare Disease

The Best Kind Of Support

Pauline Martinez, age 11
Gaucher Disease
Philippines

Rare Disease