Raising awareness in Asia on ALD - Leukodystrophy Su...

Leukodystrophy Support

195 posts

Raising awareness in Asia on ALD

KhengHui profile image
0 Replies

Our son was diagnosed 3 months ago and had undergone transplant, however, we were not successful and his condition has progressed in the process.

He is now bedridden and tube-fed.

However, we are still praying and keeping faith that he will recover.

We would like to setup similar foundation or non-profit organisation like in US and Europe to raise awareness to drive policy decision for early detection and intervention, contribute to research for a treatment, make clinical trials available in this region and provide community support for patient and family.

We would like to seek advice on where and how to start and learn from your experiences.

Thank you.

Written by
KhengHui profile image
KhengHui
To view profiles and participate in discussions please or .
Read more about...

The ability to reply to this post has been turned off.

Not what you're looking for?

You may also like...

An ALD carrier in Vietnam

Hi, I am new here. I am a ALD carrier from Hanoi Viet Nam. My brother died by ALD in 2002 at 11 and...

New in fight with ALD

Hello everyone, My name is Ramona from Romania,my son was diagnosed recently with X-ALD ,he has 8...
MonaStoica profile image

ALD symptoms

I have a 4 month old son, in which I never thought I'd be able to seeing as I am a carrier of ALD....
DallasPitman profile image

drugs for 8 years old boy suffering ALD

Hello! My son a year ago was diagnosed with ALD. The disease progressed rapidly, now he already is...
zane_a profile image

Do you want to get in touch with someone with a similar experience of ALD or AMN?

If you do, we have a contacts list full of people willing to provide support about all aspects of...

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.