Intresseorganisationer
Projektets/aktivitetens namn:
Advocacy workTidplan/datum:
Startdatum: 2023-04-01Slutdatum: 2023-04-30
Läkemedelsföretag:
UCB Pharma AB (ansvarar för innehållet i denna text)Samarbetspartner:
Dravets Syndrome Association Sweden - DSASProjektbeskrivning:
DSAS shows time and again that there is a lack of knowledge about Dravet syndrome in the health care system, which leads to great suffering for both patients and their relatives. Good care is reportedly provided at Karolinska Hospital, Lund University Hospital and Sahlgrenska. More than half of the patients live in these regions. There are reasons to suspect that patients living in other regions receive poorer care. There are good grounds for advocacy work to improve the conditions for new, effective treatment for Dravet syndrome to be prescribed in Sweden. The impact work is structured around the following three core messages, which also serve as strategic objectives. - Right treatment. The Government's goal is that all patients in Sweden should be offered good care according to need and on equal terms. This must also apply to people with rare diseases. All Dravet syndrome patients in need of effective medicines should receive them. - The right dose. Medical considerations should determine treatment - not economic or bureaucratic ones. - The patient at the centre. The quality of life of patients and their families should be at the centre of Dravet syndrome treatment. Health economic assessments must take into account the full burden of disease. Detailed overview: Koncis one pager Information material Debate articles and dispatchEkonomi – Belopp i SEK:
100 000Ekonomi – Beskrivning:
Koncis one pager 35.000 SEK Information material 40.000 SEK Debate articles and dispatch 25.000 SEKÖvrigt:
Kontaktpersoner:
UCB Pharma AB, Patric Berling, 0046705529098, patric.berling@ucb.comDravets Syndrome Association Sweden - DSAS, Johanna Engström, 0046-70-513 97 06, info@dravetssweden.se