Highlights of the World Orphan Drug Congress - WODC 2018

The WODC Europe 2018 was held in Barcelona, on the 6th to the 8th Novembre,

with the participation of more than 500 attendees, from all across Europe and the EUA. The WODC is one of the most relevant meetings for the rare disease community and for the industry working directly with this conditions. The congress is key in presenting various themes, thematic tracks, roundtables for discussion and engagement between diverse collaborators from Industry and Patient Organizations and sessions dedicated to the creation of networks.

Fundación ALPE was represented by our Scientific Advisor, Inês Alves, who participated in the Congress with the poster "ALPE Network". Susana Noval, ALPE team coordinator, also participated at the congress.

 

Image 1. Inês Alves with the presented poster. 

You can see the full ALPE poster here.

All exhibitors had a unique opportunity to inform about their services to potential buyers seeking to obtain the latest technologies in the orphan drug industry.

The agenda was filled with relevant speakers, opening with a session on the "European Reference Networks (ERNs) – What are they expected to deliver?" with Luca Sangiorgi, ERN BOND coordinator, as a keynote speaker. ERN BOND is the network for Rare Bone diseases, which is the most relevant network for ALPE and patient organizations that work for skeletal dysplasias.

Image 2. The opening session on the ERNs

Image 3. Luca Sangiorgi, BOND coordinator, talking about the issues around ERNs and what are the next steps to be taken towards supporting diagnosis to more patients

There were 18 interactive roundtables, in which up to 20 people, representatives from research companies, industry, and patients organizations could openly discuss diverse topics and present visions and solutions.

Image 4. A very interesting session on Strategies for clinical development in genetic rare disease: Study designs, operational challenges, advanced therapies & Patient finding

A key session was held on the 8th on the "Recommendations on sustainable access to innovative therapies", with keynote presentation of Yann Le Cam, EURORDIS CEO, that approached the sustainability of health spendings well as continued innovation that meets patient needs, and how does the current pricing system need to change to be overcharging the health system. In this session was also discussed a fair, inclusive and on-going multi-stakeholder approach with the potential to generate sustainable, affordable and actionable improvements in patient access to rare disease therapies.

Image 6. Session on PARADIGM

To end the morning of the 8th, there was a very relevant topic under discussion in a panel, "A PARADIGM shift: Making Patient Engagement the new norm", being PARADIGM - Patients Active in Research and Dialogues for an improved Generation of Medicines, a Innovative Medicine Initiative (IMI), in which more and more patient organizations what to make a difference, being active in the process of Drugs research and development.

This WODC edition was key for presenting ALPE work and to learn from peer patient organizations as capture the new initiatives and researches from Industry.