Rebecca Tvedt Skarberg (suggested OIFEePAG in ERN-BOND) attended the 4th Conference on European Reference Networks (ERNs) that took place in Brussels on November 22nd and 23rd 2018. “Think globally, act locally” was one of the messages from the conference. We all need to support and protect the networks to build sustainability and reach out to more rare disease experts and patients across Europe. Read more about the conference here: https://bit.ly/2BiMuS8
Watch the conference streaming here: https://bit.ly/2TF3fOy

Rebecca in Brussels together with Inês Alves from Portugal

One of the challenges that ERN-BOND and the other reference networks face is the financial situation. This is because the EU has not yet provided a template of how the different European reference networks can interact with the industry.OIFE hopes these challenges will be solved, so ERN-BOND and the other networks can reach their full potential.The next technical meeting for BOND is February 13th – 14th in Brussels.

There is an increasing focus on CPMS, the Clinical Patient Management System that is designed to allow the discussion of specific patients between experts in the networks – so the information travels, rather than the patient. A specific CPMS coordinator for ERN-BOND has been appointed, working in Bologna. Her name is Evelise Brizola and can be contacted on evelise.brizola@ior.it

OIFE is through our membership in EURORDIS, working to support ERN-BOND and the other networks where we can. A dedicated website for ERN-BOND is coming soon and OIFE will be one of the contributors. In the meantime you can read more about ERN-BOND on OIFE’s webpage: https://oife.org/what-we-do/ern-bond