15 May 2024
By IFPA
The first round of recipients of Project Rare GPP funding are announced for 2024. These projects are raising awareness of generalized pustular psoriasis, a rare and severe form of psoriatic disease.
Psoriasis Philippines (PsorPhil), proposes a comprehensive project to establish a robust network for Generalized Pustular Psoriasis (GPP) care in the Philippines. This project aims to:
Deutscher Psoriasis Bund will create a user-friendly online platform for people with generalised pustular psoriasis (GPP) that provides comprehensive information about GPP. It should offer a central point of contact for information, resources and support services for those affected. The DPB online group and the opportunity to network with other GPP sufferers will also be prominently featured. The website will be designed in such a way that it can be found as easily as possible by search engines.
APAPSO's goal is to develop the first awareness raising campaign in Peru about GPP. They will promote that the Peruvian population know the impact of GPP on people who suffer from it and eliminate stigmas caused by their ignorance. APAPSO also want to create a community of GPP patients to whom we can provide personalized support.
To develop this first awareness campaign, the association will communicate through social networks (Instagram and Facebook) and a landing page with important information about GPP. The communication tone that will be from a positive perspective. The material will be informative, awareness raising post, accompanied by testimonies from some patients in photo and video format.
The campaign will be aimed at both the APAPSO patient community and dermatology medical society.
‘It’s Time for GPP’ is a project aimed at adult patients with GPP in Greece, comprising a website for the purposes of:
The website will provide advice to GPP patients compiled by a psychologist, with the input of a focus group of Epidermia members in a visually appealing and ‘everyday’ manner, without scientific terminology or complex words. The advice will be formulated around the idea and graphics of a clock-face with each quarter of the clock representing a different time of day, and corresponding to the types of activities people undertake at these times of day. The advice will focus on practical coping mechanisms and tips related to typical activities done at this time of day. In this way, the project presents a relatable set of advice, which is not delivered as either a set of instructions or a scientific lecture which could be regarded as boring, patronizing or overly complex. Instead, it offers particular suggestions that are applicable to the patient at specific times of the day. This deliberately delivers the advice in small ‘steps’ or ‘bites’ of information which allows the patient to absorb the ideas and try out advice, in a step-by-step way, without being overwhelmed with instructions or lists of information.
*GPP in Iceland" aims to improve the quality of life for individuals living with Generalized Pustular Psoriasis (GPP) through comprehensive support, including access to information, education, and community-building activities. Recognizing the challenges faced by those with GPP, including lack of awareness, limited access to specialized care, and social stigmatization, this project seeks to empower patients, healthcare providers, and the public with knowledge and tools to effectively manage and support GPP conditions. Activities include:
The PAG is committed to advancing research and support for the Generalized Pustular Psoriasis through collaborative efforts with local and international partners. The objectives of this project are:
The funding from Project Rare GPP will go towards supporting these goals.
The second round of Project Rare GPP applications will open on June 15. Check back at https://ifpa-pso.com/project-f...
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