by Josef De Guzman
Psoriasis Philippines (PsorPhil) is a patient support group for Filipinos with psoriatic disease. A few patents formed Psorphil as an online community where they can freely articulate themselves and discuss their conditions.
The Psorphil-GPP CARE Project is conceived to take better care of members with the GPP type of psoriatic disease through several projects such as a patient-powered registry, GPP support group, patient rescue activities, networking to hospitals, and different trial sites.
This project provides a holistic approach in expanding CARE to GPP patients through Consolidated Assistance, Research, and Education through networking among the PsorPhil advocacy group, patients, doctors, and researchers.
A. CONSOLIDATED ASSISTANCE:
- Support group for GPP under Psorphil (GPP PsorCoach). The PsorCoach program initiated by Psoriasis Philippines (PsorPhil) has been successful in producing leaders among patients that support members of PsorPhil. This will be replicated among GPP patients, with their own GPP PsorCoach as well to initiate advocacy programs among the group.
- Liaise with the Philippine Society for Orphan Disorders, Inc. (PSOD).
PSOD, the rare disease organization in the country, will be an essential collaborator for this project. The PsorPhil and PSOD will work on projects and initiatives to support Republic Act No. 10747: An Act Promulgating A Comprehensive Policy In Addressing The Needs Of Persons With Rare Disease. This Philippine law was approved on March 3, 2016, to protect and promote the rights of persons with rare diseases.
- GPP Rescue program + Teledermatology
The project will network with hospitals nationwide to establish agreements to support patients with GPP. Since most of the patients with GPP require hospitalization during an extreme flare-up, we will expand our partnerships with the hospitals by formalizing such agreements to provide patient hospitalization and support.
- 1GPP Patient-Powered registry. The lack of national data on Psoriatic disease in the Philippines puts a blank hole in the planning for patient policies. The data we will gather with the patient registry will make the doctors appreciate the broad spectrum of the disease and be able to treat the patients better and more effectively.
- GPP Trials Network. In addition to the registry as a pillar for rare disease research, clinical trials are ongoing in developing novel therapies for GPP. At present, clinical trials provide the most accessible access to novel and new medications among GPP patients. We will collaborate with pertinent specialists who have trials on GPP to establish a better understanding of the disease and drug discovery.
- Regular meetings of GPP members. Regular meetings will be organized to educate the patients and their caregivers and provide a social platform for them. Interacting with specialists is equally essential as interacting with other patients as they will learn to take better care of their condition.
- GPP MD Councilors. This group of GPP councilors will also produce GPP research to understand this rare condition better.