On 10 November 2022, Together4RD organised an event at the European Parliament to launch their main policy asks to foster collaboration between European Reference Networks (ERNs) and private partners. The event brought together members of the initiative, including ERNs, with stakeholders from the rare disease community and MEPs. MEP Frédérique Ries, MEP Ondrej Knotek and MEP Sara Cerdas hosted the event in the presence of Czech Deputy Health Minister Jakub Dvoracek at the Parliament in Brussels, providing a forum for discussion through a range of panel sessions and networking around the subject at hand.
Together for Rare Diseases (Together4RD) is a multi-stakeholder initiative, launched in 2022, aimed at supporting ERNs in their collaboration with stakeholders so as to pursue opportunities that will address unmet medical needs of people living with rare diseases.
The policy asks seeks to create a dialogue to find solutions to aid the fostering of collaboration between the ERNs and industry, an area that lacks clarity and as such has hindered ERNs in entering into dialogue with third parties. Indeed, in 2019 the Board of Member States of ERNs published a Statement around guidance for ERN-industry collaborations, but hinderances in the form of restrictions around funding and activities around registries have been experienced.
The policy asks to foster collaboration are centred around the following main aspects:
- ERN Governance: Promotion of transpatent governance structures and open dialogue to empower and advance ERN-industry collaboration
- Pre-clinical Public-Provate Research Collaboration: Create a Forum (or Fora) for public-private exchange of pre-clinical knowledge
- Independent, Well-Resourced and Effective ERN Registries: Ensure ERN registries are adequately financed via public funds and remain independent, whilst clarifying and optimising their potential for collaboration
- EU Rare Disease Action Plan: Create a comprehensive European Action Plan for Rare Diseases that supports public-private partnerships.
Speakers from the different stakeholder groups expressed their support for these policy asks and called upon European decision makers to take the steps needed to create the ecosystem necessary to building strong and health partnerships between ERNs and industry stakeholders. Frédérique Ries MEP, long-time champion of rare diseases, delivered the concluding remarks of the day, summing up the main take-away message, that an ambitions, collaborative rare diseases framework is necessary to ensuring the best quality of care for European rare disease patients.
(source: OrphaNews 18 November 2022)