Member since: November 2020
Country: Vietnam
The Vietnam Psoriasis Network is aiming for a world without psoriasis sufferers.
Their main goals are:
- To raise awareness and understanding of patients in order to boost their confidence.
- To be an active partner of all entities working on psoriasis and psoriatic arthritis. To work with therapists, medicine societies, pharmacy companies, and other organizations.
- To provide psoriasis-related information for clinical studies on psoriasis, psoriatic arthritis, and related conditions.
- To protect members’ legitimate interests and eradicate discrimination.
- To convey the voice of all patients throughout the country to competent agencies at home and abroad.
Get to know more about PSORVIETNAM below!
Thank you to Tran Hong Truong for sharing his stories, insights, and the work of the organization.
What do you consider to be your organization’s biggest accomplishment and success?
In the beginning, we had around 50 and now I cannot count how many members we have! There are so many! We have a group in each of the 11 provinces. Hopefully, in the next 5 years, we will have members all over the country! We also have a radio program, a video program, and a live stream. We have different ways to share information with our members. We have a group of patients who upload us sharing valuable information and shared experiences to our radio channel.
What are the biggest challenges that psoriasis patients face?
We need the time and resources to translate most materials because we are not an English-speaking country.
But there are 3 main challenges:
The first is treatment. It’s the main priority for our members. There are 63 provinces and cities, but there are only 6 hospitals that are in the main cities. Dermatologists have different levels of knowledge about cures and treatments. It is expensive to travel to these hospitals, and that’s why the system of medication is a big problem. Patients cannot properly access the hospitals.
The second is stigma. Families divorce or parents abandon their children if the child has psoriasis.
Information is also very hard to access. We try to give the people the right information because Facebook and YouTube have fake news and fake treatments.
What is the best piece of advice you have for skin patient organization leaders?
This depends on the country and the culture. In Vietnam, I am sure that by being patients of GlobalSkin other patient organizations in Vietnam will want to also try to become legal non-profit organizations.
Learn More About This Organization Here: www.vaynen.org
Follow them on Instagram: www.instagram.com/psoviet