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.