Beyond the diagnosis—rights, access and everyday realities 15 July 2026

https://rarerevolutionmagazine.com/beyond-the-diagnosis-rights-access-and-everyday-realities/ Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare, autoimmune disease affecting the peripheral nervous system. Individuals living with CIDP often face systemic barriers preventing them from accessing knowledgeable expert care, basic rights and meaningful inclusion. Drawing on the collective experience of European advocates Gabi Faust, Jean-Philippe Plançon, Marian Ciopec and Nancy Di Salvo we discuss the geographical lottery of treatment access, workplace hurdles and global policy gaps preventing autonomy Written by Nicola Miller, RARE Revolution Community insights from Gabi Faust, chair, GBS CIDP Self-Help Organisation Jean-Philippe Plançon, president, EPODIN (European Patients Organization for Dysimmune and Inflammatory Neuropathies) Marian Ciopec, executive manager, EPODIN Nancy Di Salvo, international affairs director, GBS-CIDP Foundation International