Empowering the Voice of
Patients and Caregivers in Asia
Rare Disease

I Will Take Care Of You

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

Give him more time, a little more training and he will be able to do it too.

Read More

Rare Disease

Do The Best You Can

Jod Teerapat Mungthong, age 18 months
Methylmalonic Acidemia, Thailand

β€œHe will not survive.” This simple sentence said by a doctor traumatized her for the longest time.

Read More

Rare Disease

Hope is Darmash

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

As his sister, I will make all his dreams and hopes come true.

Read More

Rare Disease

Happiness Comes From Within

Meryl Sarah Mammen, age 26
Pompe Disease, India

If life was that easy it would not have had been worth living.

Read More

Rare Disease

The Best Kind Of Support

Pauline Martinez, age 11
Gaucher Disease, Philippines

I begged the doctors to help her. We did not want her to be discharged without a correct diagnosis.

Read More