PROGRAMME

Vanadissalen

COMMON AND UNCOMMON IN DIABETES AND KIDNEY DISEASES

Diabetes and kidney diseases might not be rare, but there are some that is, like vasculitis diseases that belongs to ANCA-associated vasculitis that affect de smallest blood vessels in the body and gives symptoms from many different organs like eyes, lungs and kidneys. To have one of these diagnoses demands access to good treatments of course, but the combination of several diagnoses raises also demands for new types of drugs that can improve quality of life. One connected condition e.g. that might not be mentioned so often, is the fact that there can be vision loss too.

Thomas Magnusson
President, Diabetes Sverige, Sweden

Håkan Hedman
President, The Kidney Association, Sweden, Board Member, European Kidney Patients Federation

Annette Bruchfeld
Professor, Senior Consultant, Linköping University Hospital and visiting professor, Karolinska Institute

Mattias Hellström
Project leader, FOKUS Eye-Health

Moderator: Magnus Lejelöv
Experienced Leader in Life Science

Vasasalen

CVD’S, CONNECTED DIAGNOSES AND ITS EFFECT ON THE INDIVIDUAL AND SOCIETY

This seminar covers CVDs and connected diagnoses, the effect on the individuals as well as for the society. How can we provide better prevention and treatments, can a European or National Cardiovascular Health Plan improve the ongoing work?

But also about the management of medication, needs of informaiton and knowledge for people with chronic conditions to avoid relapse and new diagnoses.

Cecilia Linde
President-Elect European Society of Cardiology, Professor Head of Cardiology, Karolinska University Hospital

Ed Harding
Managing Director, Health Policy Network Partnership, Heart Failure Policy Network, UK

Elham Hedayati
M.D., Ph.D., Adjunct Senior Lecturer & Associate Professor & Senior consultant in Oncology, Karolinska Universitetssjukhuset, Sweden

Fiona Loud
Policy Director at Kidney Care UK, representing the Global Patient Alliance for Kidney Health

Anders Åkesson
President, Swedish National Heart-Lung Association

Moderator: Petra Eurenius
Co-founder FOKUS Patient, Life Science consultant

Meeting room Gästrikesalen

MEETING WITH THE NATIONAL EHLERS-DANLOS SYNDROME ASSOCIATION, SWEDEN

HSD AND hEDS – UNDERDIAGNOSED, UNTREATED AND MISUNDERSTOOD
EDS (Ehlers-Danlos syndrom) and HSD (Hypermobility spectrum disorder) are a group of genetic connective tissue disorders. Some types of EDS are rare or ultra rare while the hypermobile type (hEDS) as well as HSD are common and over 300 000 Swedes could be affected. Connective tissue is present in all parts of the human body which causes a variety of complex symptoms. At the same time, these diagnoses cannot be found under the present headlines in the Swedish health-care system. Thus, there are no specialists or clinics for this large group of patients. This, in turn, causes a lack of knowledge among medical staff, a lack of proper response and treatment, and an unacceptable level of suffering among the patients.

Lara Bloom
President and CEO, The Ehlers-Danlos Society, UK, Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration (Penn State College of Medicine), Vice President, IAPO – International Alliance of Patients Organizations.

Elke Schubert Hjalmarsson
Specialist Physiotherapist with a PhD in Physiotherapy at Queen Silvia Children’s Hospital, Member of the Swedish Specialist Network for HSD/hEDS, Member of The EDS Society’s Scientific Committee.

AnnaLena K Andrews
Director, The Swedish National Ehlers-Danlos Association.