Primary Care Task Force on « Identifying Key Challenges and Opportunities to Advance IRDiRC Goals with Focus on Primary Care » The IRDiRC Diagnostics Scientific Committee (DSC), Interdisciplinary Scientific Committee (ISC), and Funders Constituent Committee (FCC) have set up a joint Task Force to identify challenges and opportunities in rare diseases research focusing on primary care. This may include diagnosis,…
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The Innovative Medicines Initiative (IMI) is organising a series of online live sessions on IMI’s Impact, where key actors will explore the challenges and demonstrate how IMI contributed. The next session will be focused on patient involvement on the 7 October at 14:00-15:30 (CET/Brussels Time). Registration is open here. They will analyse the challenges and…
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The European Forum for Good Clinical Practice and the Drug Information Association are organising The Paediatric “Better Medicines for Children” Conference, an annual flagship event providing a unique opportunity to share best practice updates and a truly global outreach. The event will take place on 18-19 October 2021. Registration is open here. This year the…
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Biogen has collaborated with SMA Europe to develop a tool called the Spinal Muscular Atrophy (SMA) Policy and Access Tracker, which offers an in-depth assessment of how 23 European countries are performing in terms of access to SMA treatment, care and supporting policies, identifies the major areas for improvement, and provides policy recommendations to tackle…
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EJP RD is co-organising a series of 3 workshops dedicated to drug repurposing for rare disease. Registration links will be provided soon. Registration is free but places are limited. This first session, which will be held on October 21st, is entitled “An introduction to drug repurposing for rare diseases – the benefits, the process and…
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EJP RD held its annual General Assembly and Consortium Meeting on 14-16 September 2021. The event gathered over 400 registered participants, with 90 to 120 participants per session. The satisfaction survey showed that 92% of participants were satisfied/very satisfied overall with the meeting. Collaboration, Innovation, Data, Funding & Empowerment are key for the European Joint…
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The International Mouse Phenotyping Consortium (IMPC) is organising a virtual conference titled « Mouse Genetics and Genomic Medicine » to celebrate the occasion of the 10th anniversary of the establishment of the IMPC. The fully virtual conference will take place over two days on September 23rd – 24th. On Day 1 of the conference (September 23rd from 17.35 to 18.00 CET), Dr. Daria…
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The National Press Foundation is organising a two-day online workshop entitled « Covering Rare Diseases ». The workshop will take place on September 13th-14th. EJP RD and IRDiRC Scientific Secretariat Coordinator Daria Julkowska along with other IRDiRC members Lucia Monaco (IRDiRC Consortium Assembly Chair), Durhane Wong-Rieger, Gareth Baynam, Samuel Agyei Wiafe, Anne Pariser and Ritu Jain will…
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RWE4Decisions, a multi-stakeholder initiative commissioned by the Belgian National Institute of Health, is organising a webinar entitled “Delivering a Health Data Strategy for the European Reference Networks (ERNs): Developing a Shared Vision with All Stakeholders” to discuss what a co-created Health Data Strategy for the ERNs could look like. The webinar will take place on September 29, 2021 from 16.00…
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The Professional Society for Health Economics and Outcomes Research (ISPOR) is organising a webinar entitled “Health Preference Research in the Context of Gene Therapy in Rare Diseases” that will be limited to 1000 registered participants on a first-come, first-served basis. The webinar will take place on September 27, 2021 from 16.00 – 17.00 CET. This webinar will present the value…
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