Project Rare GPP 20204: Recipients for Round 2

03 October 2024

By IFPA

The second round of Project Rare GPP 2024 is complete and six new recipients have been selected.

Psoriasis Australia

Psoriasis Australia proposes to develop a condition-specific website for people living with GPP. This website will be designed to act as a care hub and provide tailored information and support that aligns with a person’s information needs across all stages of the patient’s journey.

The Care Hub will empower people living with GPP to take control of their condition and become active participants in its management. The website will provide a central hub with comprehensive information about the condition, including treatment and care options, building a health care team, self-management strategies, patient/carer forum and GPP patient registry. It will also provide links to local support services offered by Affiliate organizations.


Psoriasis- og eksemforbundet

The purpose of the project is to be able to reach out to people living in Norway with GPP, to be able to provide them with high quality help and advise and to create a safe space and a community for this particular group of patients.

Psoriasis- og eksemforbundet (PEF), the Norwegian psoriasis and eczema association, want to connect with patients with GPP from all over Norway and improve their wellbeing and quality of life by:

  1. Offering high quality help and advise through our helpline, staffed by dermatology nurse
  2. Providing high quality help and advise through information on our website and in social media
  3. Creating safe spaces and a community for the patient group to connect and communicate with each other


AEPSO

This project aims to raise awareness about Generalized Pustular Psoriasis (GPP) among patients and primary care doctors. Given the rarity of GPP, the initiative focuses on educating both patients and medical professionals on recognizing and managing GPP flares, which can be life-threatening if not properly addressed. The project will include a webinar with a dermatology expert, targeted educational materials for primary care doctors and ER staff, and a public awareness campaign to empower patients. The training for primary care doctors and ER staff will be conducted in collaboration with SOARPSO (Sociedad Argentina de Psoriasis), leveraging their expertise and network to maximize the reach and impact of the initiative.

Autoimmune Disease Patients Association (APAARO)

In Romania, APAARO will raise awareness of GPP, which is rare and under represented. The main problem is the diagnosis. The patient in full flare reaches the emergency room, receiving here medication that eases the pustules, but does not continue the journey further to the medical dermatologist to receive a clear diagnosis and adequate treatment. The disease is not recognized in the emergency system and the patient does not reach the specialist doctor.

A project like this helps us to take patients to the dermatologist for a correct diagnosis and not to mistakenly consider it a superinfection of psoriasis vulgaris. Pustular psoriasis is a completely different condition compared to psoriasis vulgaris.

Psoriasis Association Taiwan

This project centers on a manual for caregivers of patients with Generalized Pustular Psoriasis.

Generalized pustular psoriasis (GPP) is a rare and severe skin disease. In Taiwan, the GPP prevalence rate reached 4.75 cases per 100,000 population in 2020, which is considerably high compared to the global prevalence of one to seven cases per million population. GPP brings great psychological and physical pressure not only to the patients themselves but also to the caregivers and family members. In the real-world service experience of Psoriasis Association Taiwan, patients’ caregivers and family members often lack care guidance and support, and caregivers frequently feel helpless in caring for patients. The association hope to establish a comprehensive care manual for caregivers and family members of patients and to improve the quality of life of patients, caregivers, and family members.

Acción Psoriasis

Imagine a world where patients with GPP and the community had access to a personalized, supportive and medically approved companion available 24/7. This could become true with GPP Companion / PsoriaTech / SkinGuardian / DermDuo (Insert Project Name) an innovative AI generative multi-language chatbot that using advanced AI algorithms will respond to the vast number of questions the PPG patients and their families have. Not only providing curated answers to questions but also providing additional education content (documents, videos, infographics) to further educate and support them. A groundbreaking and extremely necessary tool in patient education for the PPG Patients and community.

If you are interested in joining IFPA to raise awareness of GPP, you are welcome to apply for funding when Project Rare GPP opens again in 2024. The fund is open to all patient organizations invested in raising awareness of this rare condition.