News

Tegsedi Available to FAP Patients in Spain at Reduced Cost

Spain’s Ministry of Health has added Tegsedi (inotersen), an injection  treatment for stage 1 or 2 polyneuropathy in adults with familial amyloid polyneuropathy (FAP), to the national list of prescription medicines that patients are reimbursed for using. With this decision, Tegsedi will be the first at-home…

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together online during the COVID-19 pandemic. The 10th European Conference on Rare Diseases & Orphan Products (ECRD2020) — which was set for May 14–15 in…