Intresseorganisationer
Projektets/aktivitetens namn:
Nordic Rare Disease Summit 2025, Copenhagen, DenmarkTidplan/datum:
Startdatum: 2025-09-16Slutdatum: 2025-09-17
Läkemedelsföretag:
Takeda Pharma AB (ansvarar för innehållet i denna text)Övriga medverkande läkemedelsföretag:
Alexion AstraZeneca Rare Disease
Swedish Orphan Biovitrum
Novo Nordisk Scandinavia AB
Samarbetspartner:
Riksförbundet Sällsynta diagnoserProjektbeskrivning:
A recurring event that brings together decision-makers, healthcare professionals, patient organizations, academia and the pharmaceutical industry for Rare Diseases in the Nordic region to discuss the challenges and propose joint solutions for people living with rare health conditions. The conference is a collaborative effort alongside organized by Alexion AstraZeneca Rare Disease, Novo Nordisk, Sobi and Takeda Pharma in collaboration with SBONN. SBONN is a Nordic network for people living with rare diseases. SBONN was formed in 2014 to promote closer cooperation between rare disease organizations in the Nordic countries. The Swedish Association for Rare Disease is part of SBONN. SBONN will conduct a survey among its members/patients and the results will be presented at the Nordic Rare Disease Summit in September in Copenhagen. FTI Consulting has been contracted to execute the Nordic Rare Disease Summit and compile the results of the patient survey.Ekonomi – Beskrivning:
Total Budget: 865.000 EUR / 6.45M DKK The costs are shared between the parties, and include costs for FTI consulting, technology, venues, lecturers, refreshments, etc.Övrigt:
This text has been jointly authored by the companies (see contact details below), and published in the LIF database by Takeda on behalf of all parties.Kontaktpersoner:
Takeda Pharma AB, Helena Bladh, 08 7312800, helena.bladh@takeda.comRiksförbundet Sällsynta diagnoser, Karin Högvall, 072-269 62 04, info@sallsyntadiagnoser.se
Alexion AstraZeneca Rare Disease, Ziba Zareie, 070-315 3544, ziba.zareie@alexion.se
Swedish Orphan Biovitrum, Björn Berglund, 08 697 20 00, mail.se@sobi.com
Novo Nordisk Scandinavia AB, Anna Yng, 0763075124, ayqx@novonordisk.com