IFIC Scotland and partners are delighted to announce the fourth webinar in our Integrated Care Matters Series 7. This series considers innovations in holistic and personalised approaches to integrated care and support.
Our April webinar will feature examples of Child and Family Centred integrated care.
Each webinar will be accompanied by a topic resource with links to further information.
All who register will receive links to the recordings and topic resources.
Please see corrected photo for Marianne Tyler below.
Join us for #IntegratedCareMatters7
Co-Hosts
Prof Anne Hendry
Senior Associate, International Foundation for Integrated Care (IFIC)
Director, IFIC Scotland
Honorary President European Patients' Forum, Chair of the Agrenska Foundation, Sweden
Anders was involved in the founding of the Agrenska Centre in 1989. He served as director until 2004 and since then has been Chairman. He is responsible for establishing The Agrenska Virtual International Academy, a research centre for rare disorders, and has served as chairman of the Council of the Eesti Agrenska Foundation since it was established in 2003. A member of the EURORDIS board, he was president from 1999 to 2001. During this period EURORDIS was instrumental in establishing COMP (The Committee for Orphan Medicinal Products) at the European Medicine Agency. He represented EURORDIS as a member of the board of the European Patients’ Forum (EPF) until 2016, was president from 2005 to 2016 and was then appointed Honorary President.
Dorica is founding member and president of the Romanian Prader Willi Association, of the Romanian National Alliance for Rare Diseases and of the Romanian Association for Rare Cancers. She has been a member of EURORDIS board since 2007, and is a member of both the National Council for Rare Diseases and the Economic and Social Council and has been an Ashoka Fellow since 2018. Doris coordinates the strategic activities of the NoRo Center and the efforts of the employees and volunteers to achieve their objectives. She also facilitates finding of the necessary resources for all these to happen. She has a degree in psychology, with over 15 years of experience in lobbying and advocacy in the field of rare diseases.
Karsten first entered the field of Rare Disorders as a student working at Frambu’s summer camps for children and youths with rare disorders. This was back in 1997 and led to nine very meaningful and inspiring summer holidays working at camp. In 2007 Karsten started full-time at Frambu as a Physiotherapist, but soon moved on to a leadership position running the centre’s summer camps and adapted activities, school and day-care services. Due to a car accident, he left this position in 2021 to work as a Senior Adviser at the centre focussing on international collaboration, fundraising activities and acting as a resource in work with physiotherapy and adapted physical activities. Karsten is still responsible for running the summer camps, where they employ and train a large number of students to run the camps. This is one of the activities at the centre which he personally finds most meaningful.
Lisen has a university degree in medical librarianship and in languages and previously worked at Oslo University. Since 2009, Lisen has coordinated projects with European countries financed by EEA and Norway Grants. All projects are aimed at rare diseases and Frambu is a partner representing the donor country. Lisen also has experience of being the mother of a young man, now 40 years old, who has an intellectual disability, probably caused by a rare chromosomal disorder of unknown origin. Lisen established and ran the Norwegian organization for Williams syndrome for more than 10 years. During these years she also helped start up the Federation of European Williams Syndrome Associations.
Marianne Tyler
Senior Development Officer, Children and Young People Programme, Health and Social Care Alliance Scotland
Marianne leads a programme that aims to support the outcomes of Getting it Right for Every Child (GIRFEC) and a range of other children’s policy and practice. She is passionate about empowering disabled children and children living with long term conditions and their families to make Getting it Right for Every Child (GIRFEC) work for them. She is a strong advocate for increasing the voice of people with lived experience and the capacity of the third sector to engage with and contribute to the GIRFEC approach.
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