malaysiapws@gmail.com   +6012-339 5232           PERSATUAN SINDROM PRADER-WILLI MALAYSIA
 
 

Latest News

Prader-Willi Syndrome Awareness Month & World PWS Day 2022.

May 20, 2022
Prader-Willi Syndrome Awareness Month & World PWS Day 2022.
View Full Size
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.

World Rare Disease Day 2022.

Feb 15, 2022
World Rare Disease Day 2022.
View Full Size
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.



 

IPWSO Leadership ECHO

Feb 13, 2022
IPWSO Leadership ECHO
View Full Size
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

Feb 13, 2022
Happy New Year 2022
View Full Size
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 2021

Feb 13, 2022
The 5th Asia Pacific Prader-Willi Syndrome Conference 2021
View Full Size
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. 


The 5th Asia Pacific Prader-Willi Conference 2021

Oct 15, 2021
The 5th Asia Pacific Prader-Willi Conference 2021
View Full Size
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/


 

5TH ASIA PACIFIC PRADER-WILLI SYNDROME CONFERENCE 2021

Aug 12, 2021
5TH ASIA PACIFIC PRADER-WILLI SYNDROME CONFERENCE 2021
View Full Size
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


Prader-Willi Syndrome Malaysia, National Webinar 2020

Aug 12, 2021
Prader-Willi Syndrome Malaysia, National Webinar 2020
View Full Size
A very owesome 2 days we have had and a million THANKS to the whole team!!

A big shout out to our SUPER HEROES Abg Azhar, Lantz , and Stef who worked so hard and made this possible.
All of you did a STERLING job taking lead in this!!!!

And to Nadiah , we are incredibly impressed, no words can express how much we are in awe of your professionalism, commitment and effort that you have put in to make this webinar a successful and a memorable one. Thank you from all of us! Luv...Luv..

We could not have done it too without our honourable speakers, who put in their heart in preparing their presentations, who sat through the two whole days and who went above and beyond in ensuring they answered all the questions as best they could.


KUDOS to all !!!! Lots of Luv.


QUOTED BY JEAN LW.



 

IPWSO Conference 2019 @ Cuba

Aug 12, 2021
IPWSO Conference 2019 @ Cuba
View Full Size
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.

Run For Rare 2019

Aug 11, 2021
Run For Rare 2019
View Full Size
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.

HKL City Run @ Dataran Merdeka Charity Partner

Aug 11, 2021
HKL City Run @ Dataran Merdeka Charity Partner
View Full Size

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

 
PWSA Malaysia was selected as a Charity Partner for the run.

We received a donation from BUDIMAS Charitable Foundation.

INTRODUCTION

PERSATUAN SINDROM PRADER-WILLI MALAYSIA creates awareness and provides accurate information among public citizen about Prader Willi Syndrome. We establish network of association with organization, agencies and professionals involves in providing treatments, trainings and education to the patients. Feel free to browse through our website for more details.
CALL US NOW

PERSATUAN SINDROM PRADER-WILLI MALAYSIA

No. 132, Jalan Enggang, Taman Keramat, 54200 Kuala Lumpur, Selangor, Malaysia.
 
+6012-339 5232
Switch to Mobile Version
1
Hello! Thanks for visiting my site. Please press Start button to Contact with Admin :)

Start