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.
17 February 2021
The inspiring commitment and legacy of Christine Janus, founding and now immediate past Chief Executive Officer of the International Alliance of Dermatology Patient Organizations (IADPO)
The International League of Dermatological Societies (ILDS) and the ILDS Patients’ Organisations Working Group (POWG) wants to sincerely express, on behalf of all ILDS Members, their gratitude and appreciation to Christine Janus, who has announced her retirement as the founding Chief Executive Officer of the International Alliance of Dermatology Patient Organizations (IADPO) also known as GlobalSkin.
Christine played a key role in establishing and developing the IAPDO since its formation in 2015. The IAPDO is an international not-for-profit, global umbrella organisation which supports the needs of people with dermatological conditions. It advocates on their behalf on issues such as access to care and treatment, supporting IADPO member patient organisations, and stimulating research. The IAPDO has grown substantially since 2015, now encompassing more than 170 organisations in 58 countries covering 65 disease areas.
A list of Christine’s accomplishments would take more space than this letter allows. Anyone who has had the opportunity to work with Christine will have encountered her relentless engagement in advocating for the needs of patients, along with her remarkable energy and drive to move forward with many projects and initiatives. Her attention has always focused on improving knowledge about patients’ unmet needs to ensure a better patient-doctor relationship, and improve shared decision-making as well as to highlight the burden of skin disease and its personal, social, and economical impact. More recently, in the context of the COVID-19 pandemic, her main priority has been to ensure proper access to care for patients by taking advantage of new communications tools and platforms, soliciting various stakeholders to take all possible measures and rapidly adapting to new systems.
Christine played a key part in shaping IAPDO’s vision and mission. She is fully aware of the necessity to support patients’ organisations worldwide through education, global campaigning, sharing of best-practices and beneficial networking opportunities, building special focus communities and conducting patient–initiated research. All these efforts resulted in the impressive growth of the IADPO since 2015, and the breadth and depth of its initiatives.
Before joining the IADPO, Christine had executive roles in both the Canadian Skin Patient Alliance and in the Canadian Association of Psoriasis Patients. In all these years, the organisations she represented almost invariably received multiple national recognition awards for the remarkable work accomplished.
The ILDS and its POWG have been delighted to work with Christine over the past few years, starting with the World Congress of Dermatology (WCD) in Vancouver in 2015. Her passion and drive have not only impacted on the quality of life for those with dermatological conditions, but also on the knowledge and practice of dermatological professionals through presentations and research findings presented at many events, including the last two WCDs. Christine has also been involved in supporting the 2020-2023 Strategy development of the International Foundation for Dermatology (IFD), ensuring that patient engagement was an important consideration in the development of the IFD initiatives in low-resource and under-served regions. The IADPO is now included, as a patient representative, in the membership of the ILDS Scientific Programme Committee (SPC) for the 2023 WCD in Singapore, one of Christine’s many legacies.
Her work serves as an inspiration to us all, as caregivers, patients or other stakeholders committed to improving patient-centred care. Christine does it best in summing up her years of engagement, impressive achievements and collaborations:
I’m so proud to have been able to play a role! They said’ it couldn’t be done” but together with a dedicated team of staff, board, stakeholders and patient organisation members, we have made real tangible progress in raising the profile of dermatology through the amplification of the patient voice. Full steam ahead – there is more work to be done!
Her vision to establish a highly efficient and dynamic international organisation advocating for patient needs, rights and recognition has created a strong foundation. It is now our turn to take up the torch and build on Christine’s many successes, and to ensure the recognition of patients as a key stakeholder in our projects and initiatives. Christine has been our ‘go-to’ person regarding patient engagement, for her passionate commitment on behalf of patients. Whilst the ILDS and its POWG will miss her enthusiasm and technical knowledge, we look forward to working with Jennifer Austin (Interim CEO) and continuing our close partnership with the IADPO. We wish Christine all the best on her future endeavours with new inspiring challenges and we hope we will be able to continue to work with her in the future.
Chair, ILDS Patients’ Organisations Working Group