Recipients Announced! Project Rare GPP - 2024 Round 1

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

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:

  • Map partner hospitals: Identify and develop partnerships with hospitals across the Philippines equipped to provide specialized GPP care.
  • Develop a GPP care network: Foster collaboration and knowledge exchange between partner hospitals, ensuring consistent and high-quality GPP management nationwide.
  • Deliver GPP training: Equip healthcare professionals with the knowledge and skills to diagnose, manage, and treat GPP effectively.
  • Conduct PsorCoach Master Class: Train individuals with GPP to become PsorCoaches, empowering them to support and educate others living with the condition.
  • Conduct a Study on Patient Knowledge about GPP: Create a study that aims to describe the knowledge, attitudes, and practices adopted by Filipino patients with GPP.
  • Facilitate membership in APARDO and RDI: Secure memberships for partner hospitals in the Asia-Pacific Association of Regional Dermatology Organizations (APARDO) and the Psoriasis Research Institute (RDI), granting access to valuable resources and international collaboration opportunities.

Deutscher Psoriasis Bund

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 Peru

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.

Epidermia

‘It’s Time for GPP’ is a project aimed at adult patients with GPP in Greece, comprising a website for the purposes of:

  1. providing GPP patients with useful advice supplied by a psychologist about wellbeing and everyday life with GPP, including- practical tips, coping mechanisms for work, leisure, social life, sleep, work, family life etc. and ways to access support in Greece,
  2. developing and promoting Epidermia to become the center for contact, support and communication for GPP patients in Greece. The website will be linked to Epidermia’s central site. It will be promoted through informational leaflets (addressed to patients and directing them to the website, where they will find the project information, advice and access to Epidermia), social media and communication with doctors.

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.

SPOEX

*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:

  • Educational Workshops and Seminars: Deliver workshops focusing on GPP management, treatment options, and lifestyle adjustments to improve patient outcomes.
  • Digital Resources Platform: Develop an online hub with resources, including informational articles, treatment updates, and patient stories.
  • Support Groups: Establish online and in-person support groups for GPP patients and their families to share experiences and coping strategies.
  • Advocacy Campaigns: Organize campaigns to raise public awareness and advocate for policy changes that benefit the GPP community.
  • Training for Healthcare Providers: Offer training programs for healthcare professionals on the latest GPP treatment protocols and patient management strategies.

Psoriasis Association of Ghana

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:

  1. To raise awareness about GPP among healthcare professionals, patients, and the general public in Ghana.
  2. To dispel myths surrounding GPP through awareness creation
  3. To establish a registry and biobank of GPP patients in Ghana for epidemiological, clinical, and genetic studies.
  4. To provide educational resources, support services, and psychosocial counseling for GPP patients and their families.
  5. To facilitate collaboration with local and international stakeholders to advance research, training, and capacity-building initiatives in GPP.

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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