24th Workshop of the EURORDIS Round Table of Companies: "Bringing solutions to young rare disease patients"

24th Workshop of the EURORDIS Round Table of Companies

"Bringing solutions to young rare disease patients"

Let's discuss the paediatric regulation

Tuesday, 27th September, 2016

Attendance at this event is limited to corporate representatives from EURORDIS’ Round Table of Companies’ members, or by invitation only.

Programme 

Concept paper 

Registration:

Registration for this event is now closed.

Please address any questions to Anne-Mary Bodin at: anne-mary.bodin@eurordis.org

Topic:

This interactive meeting will look back at experience gained specifically in the field of rare diseases since the launch of the paediatric regulation in 2006. The impact of the legislation and development of products for children affected by rare diseases will be presented.

Participants will then discuss how this regulation could bring more solutions to young rare disease patients through potential improvements such as:

  • Increased training and engagement of parents and young patients (conditions of success and type of training needed)
  • How Extrapolation and design of Small Population Clinical Trials (SPCTs) can help
  • How to make PIP work for rare diseases? What can industry do to perform more studies on children?

Venue:

Fundació Doctor Robert
Casa Convalescència
Universitat Autònoma de Barcelona
C/Sant Antoni Maria Claret, 171 (corner of Sant Quinti)
Barcelona, Spain

The workshop venue is situated on the grounds of Hospital de la Santa Creu I Sant Pau.

Welcome Dinner:

As part of this event, you are invited to a complementary Welcome Dinner on 26th September 2016 at 20.00. 

BRAVO24 Restaurant (located inside Hotel W)
Plaça Rosa dels Vents,01 
08039 Barcelona 

Directions

Dress code is smart casual. Please confirm your presence at dinner in the registration form.

Hotels:

Please make your own hotel reservations and travel arrangements. You will find a list of hotels close to the workshop venue and directions here: Hotels in Barcelona

Questions:

Please direct any questions to Anne-Mary Bodin at: anne-mary.bodin@eurordis.org

 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases