Solidarity Fund 2023 Recipients are Announced!
12 April 2023
By IFPA
Grants from IFPA's 2023 Solidarity Fund have been awarded to six IFPA members. Each of the recipients will use the grant towards a project to improve the lives of people living with psoriatic disease. Explore the projects here!
Communication Pack for Psoriasis Awareness
With the population of 100 million, Vietnam has about 3 million people living with psoriasis. Advocacy programs have been run every year by PsorViet and Vietnam Dermatology Society, reaching many good results. However they still do not reach all psoriasis patients and their families.
PsorViet will build a communication pack including documents, video, and audio recordings for people living with psoriasis in Vietnam. These resources will include interviews with doctors, nurses, people with lived experience and experts in dermatology, psychology, arthritis, nutrition, and more.
Recorded videos and podcasts will be broadcast on PsorViet’s channel, and Vietnam Dermatology Society’s channel, and will also be used as training materials both online and offline. These materials will reach some hundreds of thousands of people in the first year, and millions of people after two or three years.
Tips for Mental Wellbeing When Living with Psoriatic Disease
Epidermia plans to build on the work of the helpful and insightful ‘6 Tips for Mental Wellbeing When Living with Psoriatic Disease’ by Rome Naidoo, to disseminate the ideas and advice more broadly. Epidermia will create 10 visually appealing social media posts and stories, each highlighting one tip for mental welleing when living with psoriatic disease. These tips will be diffused broadly throughout Greece via Epidermia’s social media channels and website. Each tip will involve an attractive ‘semi-moving’ graphic, together with practical advice on how to achieve the aims offered in the tip. Each social media post will reference and credit both Mr Naidoo and IFPA as the source of the original materials.
Living with psoriatic disease is not only physically difficult, but also causes mental strain, while at the same time, stress and worry negatively impact the symptoms and severity of the psoriasis itself. Epidermia intends to undertake this specific project because while there is a basic level of information about the physical issues of psoriatic disease in Greece, there is a gap in terms of meeting the needs of patients’ mental health and wellbeing. The psychological and social issues connected with psoriatic disease are not considered widely or in-depth by healthcare practitioners and there is little psycho-social support for patients, or understanding by the public of the mental health aspects of psoriasis.
The project hopes to directly reach 6,000 people living with psoriatic disease in Greece to provide them with factual, useful and vital information about mental wellbeing. In addition, the project should be able to reach 5,000 members of the general public to raise awareness about the issues around mental health and psoriatic disease. These numbers are based on previous similar campaigns carried out by Epidermia,
Raising Awareness of Scalp Psoriasis Among Hairdressers
Psoriatic patients feel uncomfortable to talk about their scalp condition with their hairdressers. A number have deliberately postponed their visits to the hairdresser due to this tension. Psoriasis Association of Malaysia has, therefore, planned an activity about raising awareness among hairdressers through discussions and flyers so that they would continue to build the trust with their psoriatic clients and put them at ease. To-date no formal engagement has yet to be initiated with the hair dressers association in Malaysia on psoriasis (and in particular scalp psoriasis).
It is hoped that this activity will reach out to some 50 hair dressers in the Klang Valley area and that repeat dialogues with other hair dressers at selected locations throughout the country will be undertaken dependent on performance of this initial activity. The flyer on scalp psoriasis is expected to reach out more than 200 hairdressers and 500 psoriatic patients. These numbers will increase if regional dialogue sessions are held.
It is planned that this activity is undertaken in partnership with the Dermatology Association of Malaysia (PDM).
Starting on the Right Path with Psoriatic Disease
The Psoriasis Association of Kenya (PAK) aims to create an online campaign targeting new patients who don’t have a grasp of psoriatic disease & core mobility. At the end of the campaign, a forum will be hosted to get to know new members and recruit PAK Ambassadors for future projects. This campaign will focus on raising awareness around psoriasis, advocating not to discriminate patients living with the condition and educate on the condition not being contagious.
The project plans to reach 2050 new patients and caregivers in Nairobi. To reach this total, PAK will run a 4-week online campaign targeting 2000 viewers. This will cover various topics related to psoriasis. Hold a Forum on 1st April targeting 50 attendees. 15 of these attendees will be recruited to be PAK Ambassadors.
The objective of this project is to strengthen the psoriasis patient and care giver community by equipping them with knowledge about the condition and providing group support.
Health Literacy for Improved Health Outcomes
SAPSA is undertaking a digital health information project in which a patient-centred digital tool can be designed to help individuals explore their health journey in terms of different levels of care and credible treatment options. This proposed interactive tool will be housed on the SAPSA website to be accessible for all viewers and referred to from social media and Google searches. It will offer an innovative informed resource that will be accessible to all through their different devices, particularly cell phones that are the most dominant device for people in South Africa (and on the African continent) for accessing information online.
The purpose of this tool is to improve the lives of patients with psoriatic disease and those around them. The information will be evidence-based drawing on recently produced guidelines both locally and globally. Health literacy will be enhanced by using media beyond text such as images and videos which will be downloadable and freely available for distribution. For instance, for topical treatments we will include practical videos to illustrate how to apply the lotions and remove them afterwards, as well as important practical hints such as pot care.
Furthermore, SAPSA would like to use part of the grant to promote the digital health information project abroad, and collect international input. The IFPA Annual Forum member meetings provide a unique opportunity to network with other member organizations and engage with matters around psoriasis support. SAPSA will use the Solidarity Fund to finance committee member Gloria Mokoana’s attendance at the IFPA Forum in Singapore. Gloria will promote SAPSA’s goals and objectives for this project at the meeting to help build IFPA’s capacity.
Researching the Economic Burden
Hong Kong Psoriasis Patients Association is conducting a survey on the patient’s economic burden with psoriatic disease. The analysis will be conducted using a software called Qualtrics. The survey is expected to reach 80-100 people. The outcomes will be used to create awareness and advocacy resources in Hong Kong.
Click here to learn more about the IFPA Solidarity Fund.
Sign up to our newsletter