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Supporting patient self-management in rare disease

Living with any chronic health condition can be demanding, but rare diseases bring a unique set of challenges for patients.

These can range from diagnosis difficulties to limited information and support, a lack of knowledge - even within medical services - and social stigma. Such challenges negatively impact patients and carers - preventing the best possible health outcomes from being achieved.  

This webinar will help pharmaceutical companies understand how they can better address the unmet needs of such patients.

On Tuesday 15 July at 2pm this free event will feature a health psychology specialist and a patient research expert, who will discuss how a ‘belief-based’ support approach, combined with the latest thinking in health technology, could be the answer to meeting the needs of patients with rare diseases.

The webinar will also investigate how a long-term strategy that accommodates the changing support needs of individual patients from childhood to adulthood can be delivered at a global level - while still resonating at an individual level for patients.

Speakers Biography's
Dr Sumaira Malik

Dr Sumaira Malik
Health Psychology Specialist

Dr Sumaira Malik (BSc Hons, MSc, PhD) has a PhD in Applied Psychology from the University of Nottingham. Her role within Atlantis involves contributing to the design, implementation and evaluation of programmes to support patients with chronic illness – with a particular research focus on rare diseases. She has worked across a range of therapy areas including Psoriasis, Oral Contraception and MS. Other research interests include the use of digital technologies, reproductive health, workplace well-being and qualitative methodology. Sumaira has published a number of papers and presented her work at both national and international conferences. She is also a Chartered Psychologist, Associate Fellow of the British Psychological Society and a Chartered Scientist.

Nadine van Dongen

Drs Nadine van Dongen, is founder of the Patient Intelligence concept and the PIP Health international patient research platform. She has collaborated with Diabetes UK, Women’s Health Concern, the Cure Parkinson’s Trust, National Rheumatic Arthritis Care society and many more patient advocacy groups in the United Kingdom. Dr van Dongen is founder and managing director of PIP Health, the online patient platform that gives access to thousands of European patients that fill in her health related questionnaires. She has published numerous peer reviewed articles on the applications of Patient Intelligence with the overall aim to improve quality of healthcare. For more information on PIP Health visit and view the animation video here

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