Managing Progression on Frontline Immunotherapy: A Multidisciplinary Case Approach In Metastatic Melanoma Authors: Gino K. In, MD, MPH; Sunandana Chandra, MD, MS; Robert J. Lewandowski, MD; Ali Rastegarpour, MD

https://www.medscape.org/viewarticle/1002675?sso=true&uac=148436CN&src=mkmcmr_driv_stan_mscpedu_251031-OUS-HONC-1002675-cta

EURORDIS & EPF: ‘No future for pharma without patients at the table’ October 2025

EURORDIS & EPF: ‘No future for pharma without patients at the table’ October 2025 As negotiations on the revision of the EU Pharmaceutical Legislation resume tomorrow, the European Patients’ Forum (EPF) and EURORDIS – Rare Diseases Europe urge the Council to carefully reconsider its position on patient involvement and to ensure that the upcoming discussions with the European Parliament and the European Commission preserve and strengthen the role of patients throughout the legislative process.  https://www.eurordis.org/eurordis-epf-no-future-for-pharma-without-patients/

Why the EU Biotech Act will – and how it must – matter for rare diseases October 2025

Why the EU Biotech Act will – and how it must – matter for rare diseases October 2025 The European Commission is consulting on its forthcoming EU Biotech Act – a flagship initiative of the European Life Sciences Strategy – that aims to strengthen Europe’s capacity to innovate, compete globally, and translate biotechnology into benefits for people and society. https://www.eurordis.org/why-biotech-act-must-matter-rare-diseases/

Twenty years of dialogue: EURORDIS Round Table of Companies marks its 40th workshop October 2025

Twenty years of dialogue: EURORDIS Round Table of Companies marks its 40th workshop October 2025 Last week, EURORDIS marked 20 years since the creation of the EURORDIS Round Table of Companies (ERTC) – a unique platform that brings together companies addressing rare diseases with patient representatives, experts, and public officials in a non-competitive environment. https://www.eurordis.org/twenty-years-of-dialogue-ertc/

Our story: Losing our daughter to vascular Ehlers–Danlos Syndrome (vEDS) October 2025

Our story: Losing our daughter to vascular Ehlers–Danlos Syndrome (vEDS) October 2025 One year after the passing of his daughter Janine, Wim Feenstra shares a moving account of Janine’s experience with Vascular Ehlers–Danlos syndrome (vEDS). https://www.eurordis.org/losing-our-daughter-to-vascular-ehlers-danlos-syndrome-veds/

Finding Strength in an Unexpected Diagnosis October 2025

Finding Strength in an Unexpected Diagnosis October 2025 In this interview led by Matt Bolz-Johnson, Liana La Forgia shares her daughter’s diagnosis of Multiple Osteochondromas. Through setbacks, surgeries, and small victories, she reflects on resilience, informed caregiving, and the power of community support. https://www.eurordis.org/finding-strength-in-an-unexpected-diagnosis/

EU Biotech Act: Opportunities and challenges for the rare disease community +... +++

https://www.eurordis.org/members-webinar-eu-biotech-act/ October 2025 The European Commission is consulting on its forthcoming EU Biotech Act – a flagship initiative of the European Life Sciences Strategy – that aims to strengthen Europe’s capacity to innovate, compete globally, and translate biotechnology into benefits for people and society. For the 30 million Europeans living with a rare disease, biotechnology has already proved transformative. Put in simple terms, biotechnology is the use of living systems and biological processes to improve health and the environment: from genetic testing and molecular diagnostics to life-changing gene and cell therapies, it continues to redefine what is possible in medicine. The EU Biotech Act seeks to build on this progress, helping Europe move more swiftly from scientific discoveries to new products such as treatments and diagnostic tools, while driving scientific excellence and industrial growth across the Union. While most debates have focused around competitiveness, EURORDIS works with the Commission and its partners to ensure the Act delivers meaningful progress for the rare disease community. In our recent webinar, we explored what the Biotech Act is expected to achieve, why it matters, what EURORDIS is calling for, and how patient organisations can help shape it through the Commission’s public consultation open until 10 November 2025. "With the EU Biotech Act, we have a real opportunity to strengthen Europe’s leadership in health innovation – not only for competitiveness, but above all for patients. We want innovation to happen in Europe, so that new therapies for rare diseases are developed, tested, and made accessible here. This means creating an ecosystem where research, regulation, and investment work together." – Fabio D’Atri, Policy Officer, European Commission (DG SANTE) About this initiative https://ec.europa.eu/info/law/better-regulation/have-your-say/initiatives/14627-Biotech-Act_en Commission launches new strategy to make Europe a global leader in life sciences by 2030 https://ec.europa.eu/commission/presscorner/detail/en/ip_25_1686 About this consultation https://ec.europa.eu/info/law/better-regulation/have-your-say/initiatives/14627-Biotech-Act/public-consultation_en