The RDAF organizes multistakeholder meetings bringing together experts from companies developing treatments, diagnostics, or providing any related service and additional experts in the field of rare diseases.

Meetings 2020

Registries for rare diseases in Switzerland – Opportunities and Challenges


Guest speakers:

Dr. Andreas Uttenweiler (Moderator, Takeda / RDAF)

Dr. Jasmin Barman-Aksözen (Stadtspital Triemli, Stadt Zürich)

Dr. Andrea Klein (Leitende Ärztin am Universitäts-Kinderspital beider Basel und des pädiatrischen Muskelzentrums am Inselspital Bern)

Dr. Pascal Escher (Universitätsklinik für Augenheilkunde, Inselspital Bern)

Dr. Andreas Jung (Abteilung Pneumologie am Universitäts-Kinderspital Zürich, Executive Committee European Cystic Fibrosis Society)

Dr. Bernhard Krems (Santhera Pharmaceuticals)

Anja Bührer (SFL Regulatory Affairs & Scientific Communication GmbH)

Dr. Patrick Schneider (Hölzle, Buri & Partner)


Meetings 2019

Art. 71 KVV and the OLUtool NonOnco in the field of Rare Diseases


Guest speakers:

Dr. Jacqueline de Sá, ProRaris
Dr. Saskia Karg, University Children‘s Hospital Zürich
Dr. Andreas Uttenweiler, Takeda
Dr. Jürg Zollikofer, SGV/SSMC
Dr. Beat Kipfer, KPT
Martina Weiss, Claudia Stieger, Helsana

Meetings 2018

Value assessment for orphan drugs in Switzerland and the EU


Join us for this international event organized by the Rare Disease Action Forum (RDAF). Meet experts from national competent authorities, industry and patient organizations. Exchange knowledge on value assessment for orphan drugs from different European countries including Switzerland, Germany, Austria and France.


Final Program                                     Registration

Revision of the Invalidity Insurance (IV) and what it means for patients with rare diseases


Guest speakers:

Christina Fasser (ProRaris)
PD Dr. med. Jean-Marc Nuoffer (Inselspital Bern)
Rute Fernandes (Shire Switzerland)
Marina Carobbio Guscetti (National Council)
Hans Stöckli (Council of States)

Thomas Weibel (National Council)

Meetings 2017

Multistakeholder workshop: (1) Legislative developments in the Invalidity Insurance (IV) framework & (2) reference centers and international cooperation


Guest speakers:

Stefan Honegger (Swiss Federal Social Insurance Office)
Christina Fasser (ProRaris)
Prof. Dr. med. Nicolas von der Weid (University Children's Hospital UKBB, Basel)

Access to therapies for children and young people with rare diseases and developments in the Swiss Invalidity Insurance (IV) framework


Guest speakers:

Esther Neiditsch (Federal Office of Public Health)

Christina Fasser (ProRaris)

Prof. Dr med. Felix Niggli (University Children's Hospital, Zürich)

Prof. Dr med. Philipp Latzin (University Children's Clinic, Inselspital, Bern)

Claudia Geser (Inselspital, Bern)

Manuela Stier (KMSK)

Meetings 2016

How to improve access to therapies for rare diseases in Switzerland?


Guest speakers:

Dr. phil. hist. Corina Salis Gross (ProRaris)

Dr. phil. nat. Jacqueline de Sá (ProRaris)

PD Dr. med. Jean-Marc Nuoffer (Inselspital Bern)

Dr. med. Jürg Zollikofer (SGV/SSMC)

Dr. med. Arthur Krähenbühl (formerly at Visana health insurance company)

How to improve access to therapies for rare diseases in Switzerland?


Guest speakers:

Prof. Dr. med. Matthias Baumgartner (Kinderspital Zürich)

Dr. phil. Reto Kessler (Vertex Pharmaceuticals)

Dr. med. Frank Stenner (University Hospital Basel)

Dr. med. Beat Kipfer (KPT/CPT)

Meetings 2015

Access to therapies and genetic testing for rare diseases in Switzerland - Status quo and future perspective


Guest speakers:

Christina Fasser (ProRaris)

Dr. med. Alfred Wiesbauer (ProRaris)

Loredana D'Amato (Orphanet)

Prof. Dr. Anita Rauch (University of Zurich)

How to improve the application process for reimbursement of orphan medicinal products according to article 71 a/b KVV?


Guest speakers:

Dr. Patricia Hirt-Minkowski (University Hospital of Basel)

Doris Seltenhofer (Merck)

Participation of Martina Weiss (Helsana)

Access to genetic testing for orphan diseases in Switzerland


Guest speakers:

Prof. Dr. Sabina Gallati (Inselspital, University Hospital of Berne)

Dr. Nicola Stingelin (University of Basel)

Dr. Hein van Ingen (Shire)

Patient access to treatments for rare diseases and reimbursement in Switzerland


Guest speakers:

Martina Weiss (Helsana)

Dr. Roland Rutschmann (Curatis)

Shayesteh Fürst-Ladani (SFL)