The Malaysia Lysosomal Diseases Association (MLDA) is a non-for-profit patient support organisation dedicated to improving the lives of all patients afflicted by Lysosomal Storage Diseases by:

International Prader-Willi Syndrome Organisation vision is a  world where people with PWS and their families receive the services and support they need to fulfil their potential and achieve their goals.

The International Pompe Association (IPA)  seeks to coordinate activities and share experience and knowledge between different groups. 

The  aim of the organisation is to coordinate, in collaboration with its members, activities that are for the benefit of everyone affected by EB globally.

TIF’s mission is to promote and implement national control programmes for the prevention and treatment of thalassaemia and other haemoglobin disorders in every affected country.

TSCi  share information, exchange ideas and methods, co-fund research projects, and empower individuals with tuberous sclerosis complex (TSC) and caregivers, educators and health care providers.

The goal of The World Alliance of Pituitary Organizations (WAPO) is to share information, work together and support all pituitary patients’advocates all around the world.

Prader-Willi Syndrome Association (PWSA) assist individuals with the syndrome, and their families, every step of the way .

The Foundation for dedicated to empowering  the rare disease patient community to advocate for impactful, legislation that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.

The Foundation  works to help streamline the processes and legislation that slow the development and introduction of life-saving drugs targeting orphan diseases.