Member Organization: Psoriasis Philippines
Member since: April 2022
Country: Philippines
Summary:
Psoriasis Philippines, or PsorPhil, is a duly registered and globally recognized organization that represents the interests of the millions of Filipinos believed to be suffering in silence with psoriasis. In the Philippines, the estimated prevalence of psoriasis is 2.4% (Greb, et al, 2016). And in PsorPhil, we believed that this number is an understatement, as we continue to campaign on increasing the awareness of the community on this highly unbearable condition, we continue to witness the many silent sufferings of our indigent patients across the country.
Get to know more about PsorPhil below!
Thank you to Josef De Guzman, Carol Velasco, Emmylou Casanova, Liza Dela Cruz, and Paul Mendoza for sharing their stories, insights, and the work of the organization.
What would you like me to know about your organization?
We started as an online community with 5 members, and are now an established organization with 30, 000 members in the Philippines. With strong partnerships with the different medical societies, we are pushing for a Psoriasis Law and will be the first in the world. We also have the first-ever PsorCoach Program, which is patients leading other patients. Psoriasis has a very high suicidal ideation, and we were able to save as of now 1000+ people dying by suicide. We are the very first patient organization in the Philippines that conducts medical training for the doctors and municipal health workers, on what psoriatic disease is. We also host Wellness Weekend Philippines, where we discuss health and NCDs alongside the Philippine Alliance of Patients with Chronic Illness (PAPCI). We’ve also won awards for providing the most innovative patient health advocacy in the region and beyond. We also have the “Hug Me Campaign”, where we invite celebrities to publically hug someone with psoriasis to de-stigmatize the disease. We are also able to achieve all of this with a team of only volunteers! What do you consider to be your organization’s biggest accomplishment and success?
What are the biggest challenges that the organization faces?
Access to medicine is the number issue for us and the problem we are working the hardest on. Another difficulty for us is that all our volunteers are patients, and their struggle is our struggle. The cost of medicine is always out of the pocket, and only those with money can access the treatment. But even then, since it is a chronic disease, your resources will still get depleted. We rely on government institutions and agencies, and the wait even if you are promised access is over 6 months. Psoriasis Philippines can support patients by doing a Patient Rescue program where we support the poorest of the poorest patients in more rural areas, provide them medicine and connect them with local doctors, which is all through referral.
What is the best piece of advice you have for skin patient organization leaders?
It is important to be patient, persistent, and not to give up. You should not take no for an answer. You have to push for the things that you want for the organization, and remind yourself of the goal. There will be many times you will question yourself, but remind yourself of the “why”. Remind yourself of all the things you have already been able to accomplish.
Learn more about this organization by visiting their website: https://www.psorphil.org/
Follow them on Instagram: https://www.instagram.com/psorphil/
