Month of May is the Prader-Willi Syndrome Awareness Month

We will join PWS associations, groups and families to share stories to raise awareness of Prader-Willi syndrome.

Our aim is to reach more people with valuable information and support about the syndrome and the needs of people living with it.

Rare Disease Day aims to raise awareness with policymakers and the general public about rare diseases and their impact on the lives of the 300 million persons living with a rare disease (PLWRD) worldwide.

These individuals and their families experience vulnerability and are disproportionally affected by stigma, discrimination, and marginalization in all aspects of their lives.

For them, knowledge and information are scarce, and expertise is not accessible. All of this leads to specific challenges in access to education, healthcare, employment, and leisure, and causes increased impoverishment and isolation.

On top of that, the COVID-19 pandemic has worsened these socio-economic challenges.

Therefore, PLWRD requires immediate and urgent attention, under the auspices of innovative global, regional, and national policies that address their needs, respect their human rights, and lead to more inclusive, sustainable societies in line with the UN Agenda 2030 and the Sustainable Development Goals.

Celebrating Rare Disease Day 2022 is dedicated and perfectly aligned with the vision of the NGO Committee and its partners of moving towards equity, inclusion, and social justice for PLWRD and their families.

Jan 2022.

It was a great start in January 2022.

Thank you so much to IPWSO ( International Prader Willi Syndrome Organisation) team for giving me the opportunity to share with all the PWS Leaders around the globe on Developing a National Association topic.

It was an honor to represent Persatuan Sindrom Prader Willi Malaysia and Malaysia too.

With this great network, we believe that we are able to make our presence felt and impacted well to society.

Happy New Year 2022 to all.

May every wish of yours get fullfilled in the upcoming year.

The 5𝙩𝙝 𝘼𝙨𝙞𝙖 𝙋𝙖𝙘𝙞𝙛𝙞𝙘 𝙋𝙧𝙖𝙙𝙚𝙧-𝙒𝙞𝙡𝙡𝙞 𝙎𝙮𝙣𝙙𝙧𝙤𝙢𝙚 𝘾𝙤𝙣𝙛𝙚𝙧𝙚𝙣𝙘𝙚
𝑾𝒉𝒂𝒕 𝒂𝒏 𝒂𝒎𝒂𝒛𝒊𝒏𝒈 𝒍𝒂𝒔𝒕 𝒅𝒂𝒚 𝒐𝒇 𝒕𝒉𝒆 5𝒕𝒉 𝑨𝒔𝒊𝒂 𝑷𝒂𝒄𝒊𝒇𝒊𝒄 𝑷𝒓𝒂𝒅𝒆𝒓-𝑾𝒊𝒍𝒍𝒊 𝑺𝒚𝒏𝒅𝒓𝒐𝒎𝒆 𝑪𝒐𝒏𝒇𝒆𝒓𝒆𝒏𝒄𝒆 2021!

We have so many people to thank for because without each and everyone's contribution in so many ways, this conference wouldn't have been made possible!
On behalf of the PWS community in Malaysia, we would like to extend our utmost gratitude to all the wonderful PWS families for sharing their awe inspiring stories and for showing us the fighter spirit in every single one of them, to whom we draw inspirations and aspirations, and through whom we found comfort to see that our PWS loved ones can indeed live very colourful, beautiful lives.

To all the speakers, thank you for sharing your knowledge and for taking the time to answer all the Q&A's. These answers were much valuable to all of us.
The organising team and representatives from all the National PWS Associations of Thailand, Australia, New Zealand and Malaysia, thank you for representing your countries and for going all out to making this conference happen.

And as always, to our awesome host and facilitator Nadiah, your presence and engagement with everyone over the past three days has been nothing short of amazing. We thank you for everything.

We hope that all of you who attended the conference have benefited from it and please do drop a comment in this post and tell us what is your one take home message that you would like to share with everyone.

We shall all see each other again real soon, so till the next time, thank you and stay safe!

Prader-Willi Syndrome Australia
Prader-Willi Syndrome Association NZ
Persatuan Sindrom Prader-Willi Malaysia
Prader-Willi Syndrome Association Thailand
International Prader-Willi Syndrome Organisation (IPWSO)

P/s : Enjoy this exciting video montage that Mr Azhar, PWS Malaysia President, had created. It certainly evokes a sense of adventure, much like our journey of life with our PWS heroes. 

There will be a very exciting conference taking place online in October 2021 to spread knowledge and awareness about Prader-Willi Syndrome (PWS) in the Asia Pacific Region.

This conference will be of interest to parents, caregivers, medical professionals, allied health professionals, special education professionals, academicians and public citizens.

The participants will hear from experts from the region and worldwide speakers about all aspects of the care and management of PWS.

The final day of the conference will also put a spotlight on the voices of people with PWS.

Register now and get involved in this important and exciting event.

Click here https://appwsconference2021.pwsamalaysia.org.my/

Don't Forget to join us !!

See you at 5TH Asia Pacific Prader-Willi Syndrome Conference 2021.
For more detail, Please Visit https://appwsconference2021.pwsamalaysia.org.my

PWSA Malaysia participated in bidding exercise for hosting IPWSO Conference 2022.

It was a memorable moment and great achievement in the International arena.
Malaysia was known by the delegates as the most active PWS association.

KUDOS!!! to all team mates.

PWSA Malaysia took part in Run For Rare 2019 at Sunway Medical Centre.
This was one of the biggest participation by public and NGOs - 3,300 participants.

The event officiated by our Malaysia Health Minister, Datuk Seri Dr. Dzulkefly Ahmad.

Larian HKL was organised by Kelab Sukan HKL on 1st, May,2019.