IFPA Solidarity Fund
Across the world, IFPA members are working actively to improve the lives of the millions of people living with psoriatic disease. Both regionally and locally, they raise awareness and provide education towards the general public, policymakers and other stakeholders.
However, as is true for many patient associations, accessing financial support is an enormous challenge, even when arranging minor public actions and events.
IFPA is proud of the amazing work we see done by our members and want to support our heroes across the world that are truly making a difference. The IFPA Solidarity Fund was created to address the funding gap faced by many of our members, by awarding grants to support psoriasis advocacy, education and awareness-raising.
During the 2021 grant application call, IFPA received many impressive project applications. From these, IFPA was able to select six projects to receive funding. IFPA is proud to support each selected project and will continue to share updates as the projects progress.
Get introduced with the solidarity fund projects below.
VIRTUAL MENTAL HEALTH SESSIONS
The Covid-19 pandemic has exacerbated many cases of psoriatic disease and individuals’ stress levels. To provide emotional support to its members, the South African Psoriasis Association (SAPSA) is organizing virtual mental health sessions. SAPSA will organize 12 online sessions led by different mental health experts. The series of sessions aim to explore multiple perspectives of anxiety and stress related to living with psoriasis and coping with the Covid-19 pandemic.
The Japan Psoriasis Association (JPA) is releasing an updated version of their ‘Psoriasis Handbook’. The handbook includes information on what psoriatic disease is and how to live with it, the updated version also contains information on which medications are currently available for psoriatic disease.
The handbook was created to support people living with psoriatic disease and provides guidance on how to manage the condition and opt for optimal treatments.
ILLUSTRATIONS FOR AWARENESS
APAPSO Perú is collaborating with Peruvian illustrators to create a series of illustrations to raise awareness for psoriatic disease, clarify misconceptions, and to highlight the impact it has on people living with it. In addition to spreading awareness about psoriatic disease, the project also aims to support those affected. Illustrations will be shared through a social media campaign so more people will be aware of psoriatic disease, show solidarity to those who suffer from it and little by little eliminate stigmas and prejudices.
PSORIASIS PATIENT SURVEY
Epidemiological data on psoriatic disease is scarce in many countries, to fill this gap the Hong Kong Psoriasis Patients Association has built a standardized survey for psoriasis patients. The survey aims to understand psoriasis patients’ history, medical costs, patient compliance, indirect costs association with psoriasis as well as patients’ willingness to pay.
In addition to launching the survey for patients in Hong Kong, the survey will be translated to multiple other languages to be launched in other countries in the region as well.
COMMUNITY GINGERBREAD BAKING
The Psoriasis and Eczema Association of Norway aims to create conversations about life with psoriatic disease and to create an ice breaker for good conversations throughout the Christmas season. Members of the Norwegian association will be invited to traditional gingerbread cookie baking workshops, which will provide opportunity to have conversations with peers regarding life and challenges people living with psoriatic disease face.
The Norwegian Christmas tradition will be utilized to create a safe space for participants, and a custom-made cookie cutter to spark conversations. The cookie cutter is based on the Norwegian logo and is similar to an ordinary gingerbread cookie cutter, however, it is different enough to create curiosity for the people being served a cake.
During 2020, PsorViet launched a radio podcast run by volunteers in the association. The podcast has been an efficient way for the association to communicate with its members and share advocacy materials provided by IFPA and other IFPA Members. Now PsorViet is expanding this successful format and will host a training course for an additional 10 volunteers to work with the podcast. With the solidarity fund grant, PsorViet will also update the equipment used to reach their thousands of listeners to help them better understand psoriatic disease and how to manage it.