Member Organization: PSOPortugal
Member since: August 2020
Country: Portugal
PSOPortugal is a non-profit organization created in 2005 by a group of psoriasis patients with the following objectives:
- Promote improved quality of life of patients with psoriasis in their personal context, professional and social.
- Defend the patients’ rights in terms of professional and social activities.
- Promote social and cultural initiatives to raise awareness about the disease.
- Cooperate with the national research health agencies, providing information to therapists and patients about the outcome of different therapies.
- Publicize credible sources of technical information, including medical experts, types and forms of treatment.
Get to know more about PSOPortugal below!
Thank you to Jaime Melancia for sharing his stories, insights and the work of the organization.
What do you want me to know about your organization?
We started in 2005 as a group of patients because we needed psoriasis to be recognized as a chronic disease by the national government. One of our first fights was to be acknowledged by the medical and policy system. We focus strongly on advocacy to fight for better conditions regarding access to consultations, treatments as well as de-stigmatization at work, school and the like. We also work on spreading knowledge to the general public through different means, like social media, conferences, newsletters, etc.
What do you consider to be your organization’s biggest accomplishment and success?
We have a project of providing telecommunications consultations to psoriasis patients. Patients in this way do not have to pay for private consultations with dermatologists. Another thing we have accomplished is working with doctors, hospitals, and pharmacies to ensure medications are available at local clinics, and not just hospital pharmacies. This reduces barriers for psoriasis patients in accessing their important medication.
What are the biggest challenges that psoriasis patients face?
People still believe that psoriasis is contagious, despite our positive message about people living with the disease, there is still a lot of misunderstanding. But really the most important thing is access to medications, dermatologists. We are always fighting for these things and trying to make a difference.
What is the best piece of advice you have for skin patient organization leaders?
Collaborate with professionals to make your programming more efficient. It can be more impactful than working alone or not involving professionals who can provide input into your project.