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Tagged with Rare Disease

Engaging Patients and Communities for Better Outcomes
After her son was diagnosed with SYNGAP1 - an extremely rare gene mutation - Monica founded Bridge the Gap – SYNGAP Education and Research…

Frédéric Revah – CEO, Genethon; President, YposKesi,…
Genethon, a laboratory created by the patient organization AFM-Telethon, is one of the world’s leaders in the development of biotherapies for rare…

Umut Meriç – General Manager, Chiesi Turkey
Two months into the role, Umut Meriç, general manager for Chiesi Turkey, discusses the affiliate’s rapid progression and his plans to ensure…

David Atkins – CEO, Congenica, UK
Offering genomic sequencing and analysis, Congenica operates in the exciting world of genomic diagnosis, with a particular focus on rare diseases. Its…

Sean Richardson – GM, Alexion Pharma UK
Sean Richardson discusses Alexion’s focus on rare and ultra-rare diseases, the level of support for these therapies from the UK government,…

K P Tsang, President, Hong Kong Alliance for Rare Diseases…
K P Tsang, president of the Hong Kong Alliance for Rare Diseases (HKARD), shares the challenges faced by patients with rare diseases and their…

Neil Dugdale – VP & GM, UK & RoI, Sobi
Three years into his role as general manager of Sobi’s UK and Republic of Ireland operations, Neil Dugdale introduces the scope of operations of the…

Interview: Alba Ancochea – Director, FEDER, Spain
Alba Ancochea of FEDER, the association that groups together Spain’s 337 rare disease patient organizations, explains how it interacts with both…

Interview: Alicia Folgueira López – General Manager Spain…
Alnylam, pioneers in the RNA interference field, seek to bring their revolutionary medicine across Europe, and in particular Portugal before 2020. In…

José Manuel Rigueiro – General Manager, Actelion Spain
Jose Manuel Rigueiro, general manager of the Spanish affiliate of Actelion, discusses the lack of trust between health authorities and the industry…

Interview: Carla Benedito – General Manager, Shire Portugal
Carla Benedito, general manager of Shire Portugal, provides useful insight into the rare diseases landscape in Portugal. Carla discusses market access…

Interview: Bryan Morton CBE – Executive Chairman and…
With an appetite to take the next step in its rapid development, EUSA Pharma has already established itself as a leading rare-disease and oncology…
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