Partnerships with patients’ organisations
The ILDS is committed to the inclusion of the patient voice in our work and we collaborate with patients’ organisations across a range of areas.
During our 2020-2023 strategic cycle we will be developing broader, more systematic and meaningful engagement with patients and patients’ organisations. We will focus on a collaborative approach with patients’ organisations with the aim of better understanding and addressing the needs and expectations of patients with skin diseases. With better understanding we can work to improve the health and quality of life of patients as defined by patients themselves. In its unique position, the ILDS can contribute to the dialogue around patient-centred care at the international level through collaboration with all stakeholders.
A new ILDS Patients’ Organisations Working Group (POWG) was set up in 2019, Chaired by Professor Luca Borradori, in order to champion and drive this agenda.
Our objectives are:
To develop a framework for meaningful and systematic engagement and collaboration between the ILDS and patients’ organisations and patient leaders in order to:
- ensure that the patient voice is considered in ILDS’ activities
- understand the needs and expectations of patients with skin diseases and improve skin health through the development and/or dissemination of trusted and useful information and resources
- identify areas of collaboration with patients on areas of mutual interest
- foster exchange between patients’ organisations, health providers and policy-makers and nurture and support the value of patient engagement in the development of skin health policies and services
- to nurture and support the value of patient engagement
- To understand the needs and expectations of patients with skin diseases of patients’ unmet needs and rights among stakeholders, including policymakers.
Current collaborations with patients’ organisations
The ILDS is currently working with patients’ organisations in the following areas:
World Congress of Dermatology
Patient involvement is an important aspect of the World Congress of Dermatology. Read about involvement in previous congresses here. In 2023, the opportunity for patients to participate in and have their voice heard within the World Congress of Dermatology will be a priority for the ILDS and supported by a clear framework with a range of opportunities for patient engagement. We invite patients’ organisations interested in having an exhibition booth at the 25th World Congress of Dermatology in Singapore, 3-7 July 2023, to contact us to express their interest on firstname.lastname@example.org.
Alongside this, we will be actively engage patients’ organisations in the development of the Congress Scientific Programme. The WCD is an ideal opportunity for the inclusion of patients’ experiences as “disease experts” and as leaders in the dermatology community.
Global Psoriasis Atlas
The ILDS is working in collaboration with the International Federation of Psoriasis Associations (IFPA) on the Global Psoriasis Atlas. The Global Psoriasis Atlas (GPA) is the leading epidemiological web-based resource on psoriasis globally; thus informing research, policy and heath care provision for the disease worldwide. The ILDS has being collaborating with IFPA for a number of years and supported IFPA’s successful advocacy for psoriasis to be put on the global health agenda through its adoption as a WHO resolution (in 2014). https://ifpa-pso.com/our-actions/advocacy/who-resolution/
International Alliance of Dermatology Patient Organizations (IADPO)
ILDS was there at the inception of IADPO and has followed its impressive growth and development. Through frequent communication and dialogue since 2015, areas of common interest have been identified and a supportive collaboration has been established. There has been reciprocal involvement in activities such as conferences, issue specific webinars and strategy meetings. In 2020, we will continue to build on this foundation through the development of a Memorandum of Understanding and collaboration on specific projects including the World Congress of Dermatology.
Information and Support*
- International Alliance of Dermatology Patient Organizations (IADPO) / Global Skin: find your local patient group or learn how to set up a new group
- International Alliance of Patients’ Organizations (IAPO): a unique global alliance committed to improving the lives of patients from all around the world
The ILDS does not produce treatment information for patients. Below are links to patient resources that have been developed by ILDS Members.
- American Academy of Dermatology – Public Education
- British Association of Dermatologists Patients Hub
- European Academy of Dermatology and Venerology – Patient Information Leaflets
*The ILDS does not endorse or verify any of the content on these websites.