As the pandemic shows no sign of ending anytime soon, we have to adapt to times and move our AGM virtually! We want to reach out to everyone to join us for this important meeting to vote for the coming year’s committee members. We also appreciate new members that are keen to serve the association as we need more hands! As part of the new membership drive, anyone that signs up and join the AGM will get automatic membership waiver for the next 3 years. We hope to unite more members to give us more energy and ideas to move forward in the new era of psoriatic management.
As for newly diagnosed patients, what better way to meet our like minded individuals than at this meeting? Just fill up the Google Form to update current members details and to capture new membership. We will send the zoom link to those that filled up the form successfully a few days before the meeting. Will you join us please?
We know that it is a great concern for psoriasis patients during the prolonged pandemic if they are more susceptible to the virus, fears of vaccination and concern on the lack of prioritisation of immunocompromised patients for their vaccination slots.
Let’s talk about all this in the coming Live session on 3rd July at 11am with our Medical Advisor Dr Azura Mohd Affandi, Senior Consultant Dermatologist of Hospital Kuala Lumpur.
Let’s show some support to our beloved psoriasis advocate and Miss Amazing Malaysia 2019 Sofia Lovi that will be moderating the session! Just click here or you can view from PAM’s facebook page at the same date and timing. https://www.facebook.com/psoriasismalaysia.
Please do join us and share with everyone you know that needs to hear this! We look forward to your questions too.
As a federation, it is essential that IFPA’s members’ voices remain at the heart of this process.
The updated IFPA strategy will take us into the next 50 years of the organization. Progress has certainly been made over the past five decades. The introduction of systemic therapies like biologics has revolutionized treatment for millions of people living with severe psoriatic disease. Noncommunicable diseases are getting more attention among policymakers than ever before.
Still, there is much work left to be done. Access to treatment must be improved. Comorbidities must be addressed. Psoriatic disease remains a serious global health challenge, with a range of unmet needs.
IFPA’s new vision, mission, and advocacy targets will launch us into the future. Together we will tackle the physical, social, emotional, and economic burdens of psoriasis and psoriatic arthritis. A fully virtual conference this June 30th-3 July will enable more participants to join and learn on the global initiatives and adapt to our region. Look forward to it!
PAM in collaboration with SafeSpace Malaysia, Psoriasis Indonesia, restingitchface and other psoriasis advocates around the region is bringing this campaign to collect stories around the region to be publish on social media. 30 stories from the region will be featured with the aim of sharing our voices, stepping out from isolation and grouping together to support each other.
2020 is a challenging year for everyone! With Covid taking the limelight, our country has been in MCO and RMCO for the longest time. During this trying times we realised that we can still connect and support psoriasis patients by going digital. Hence, PAM is keen to do a e-gathering (that fully complies to SOP!) to get to know members better and provide a platform to share experiences and ask questions in a safe environment.
The session will take place on 29th August (Saturday) 11am and will take approximately 1 hour.
If you are keen to join us, do RSVP with us and we will send you the link to the Zoom session!
Psoriasis is always deemed as a non-life threatening skin condition, hence don’t usually get enough funding in MOH compared to other diseases such as cardiovascular or oncology. However, all of us patients have to go through the emotional stress and social stigma throughout our lives. That is more taxing on mental health on the long run. Do know that we have to dig deep to find our own inner strength to face the world daily. Let us make our voices heard. Let us all help spread the awareness of this life long condition.
Firstly, PAM would like to apologise on the silence since October/November 2019. Time is just zooming too fast for us volunteers to do more advocacy! We are officially in March 2020 with lots of uncertainties with Covid-19 outbreak and changes in Malaysia’s political scene.
Nevertheless, it’s business as usual for us psoriasis warriors and if you enjoy getting information via podcasts (best for commuting to work/school/college/chilling at home), do check out this link with lots of information on Psoriasis.
Many of times psoriasis patients wonder why should they join PAM? While we are run by 100% volunteers (and there isn’t many of us!), we can get less efficient and disorganised, we still believe in the purpose we are serving. To connect and support each other going through this long journey called Psoriasis. No one else truly understands our struggle except the next fellow patient. Through this organisation we have met amazing people that can achieve greatness despite their condition and we have met healthy individuals that give their time to support us because they feel for us. Many thanks to our medical advisors, hospitals and sponsors that have been supportive of our initiatives throughout the years. Help us normalise Psoriasis and make society aware of this condition. Do this for our next generation!
It’s time to celebrate us! The only event that allows us psoriasis patients to get to know each other and form the support system. This year we have moved to a new location with bigger space thanks to Hospital Kuala Lumpur and our generous pharmaceutical sponsors Novartis and Leo Pharmaceuticals.
Do RSVP early to secure your seats! Bring the family too as we will have activities to keep the entire family (kids especially!) entertained. This event is free for PAM members! If your membership has lapsed, this is a best time to renew (RM60 for 3 years subscription) and allows you access to all the events we organise. This token fee is use to run the association as we are entirely on a voluntary and non-paid system.
Wondering where MCNCC is? 15, Jalan 18/16, Taman Kanagapuram, 46000 Petaling Jaya, Selangor and Mr Google says it’s off Old Klang Road! https://www.google.com/maps/MCNCC
5 hari lagi sehingga kita berjumpa di Wad Dermatologi, Hospital Kuala Lumpur! Marilah kita sama-sama mendengar pandangan pakar kulit dan pakar nutrisi tentang psoriasis dan cara untuk mengawal simptomnya. Kali ini kita akan ada pameran daripada organisasi lain yang membuat sabun dan lotion yang sesuai untuk kulit sensitif. Sokongan anda amat penting supaya kita mempunyai suara yang kuat untuk tingkatkan kesedaran psoriasis di Malaysia! Kita juga akan memberi update tentang “patient survey” yang kita ingin buat untuk tahu secara lanjut beban psoriasis ini terhadap kita, sama ada dari segi emosi, diskriminasi dan lain-lain.