Tagged with Disease

Mexico David Peña Castillo is the President and founder of The Mexican Federation of Rare Diseases (FEMEXER). Here he discusses what makes a patients association. When we find a way to communicate the complexities of rare diseases simply, we can avoid isolating anyone and the potential to uncover important information is…

USA After her son was diagnosed with SYNGAP1 – an extremely rare gene mutation – Monica founded Bridge the Gap – SYNGAP Education and Research Foundation to support families of those suffering from the illness and to accelerate the path to better therapies. Here she discusses the importance of community for tackling rare…

France Genethon, a laboratory created by the patient organization AFM-Telethon, is one of the world’s leaders in the development of biotherapies for rare diseases. In this interview Genethon’s CEO Frédéric Revah explains its role in the discovery of innovative therapies since the 1990s and the recent launch of YposKesi, its innovative…

France Prof. Alexis Brice, director of the French Brain & Spine Institute (Institut du Cerveau et de la Moelle épinière (ICM)), reveals the recipe behind the success of the center since its foundation eight years ago and discusses the future of research on neurodegenerative diseases.   Could you please introduce your…

Algeria Nadia Oka-Bousbia of bioMérieux Algeria discusses the affiliate’s important role within Algeria’s fight against infectious diseases and the training of health managers, difficulties surrounding import restrictions, and the company’s constantly-evolving strategy for the future.   These are exciting times for bioMérieux locally. We understand that earlier this year, your global…

Turkey Two months into the role, Umut Meriç, general manager for Chiesi Turkey, discusses the affiliate’s rapid progression and his plans to ensure Turkish patients benefit from the global company’s latest therapies in the respiratory and rare diseases areas. Meriç underlines the importance of motivating and developing a productive, dynamic and…

Spain Dr. Carlos Macaya, one of the world’s most renowned cardiologists and president of the Spanish Heart Foundation (FEC), outlines the landscape for cardiovascular disease in Spain. Could you please start by introducing yourself? We understand that you are renowned for having operated on Mother Teresa. “I have participated in over…

UK Offering genomic sequencing and analysis, Congenica operates in the exciting world of genomic diagnosis, with a particular focus on rare diseases. Its CEO David Atkins describes the potential of Congenica’s platform and talks commercialisation. Can you please start by introducing Congenica to our international readers? “As well as disease diagnosis,…

UK Sean Richardson discusses Alexion’s focus on rare and ultra-rare diseases, the level of support for these therapies from the UK government, awareness raising, diagnostics, and his future priorities.     Let’s please start this interview by introducing the UK affiliate of Alexion to our audience. How would you describe the…

Hong Kong K P Tsang, president of the Hong Kong Alliance for Rare Diseases (HKARD), shares the challenges faced by patients with rare diseases and their caregivers in Hong Kong, the areas of improvement when it comes to rare disease policy, the advocacy work that HKARD is undertaking, and his insights on…

UK 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 Swedish rare disease player to our audience, highlighting the company’s unique positioning in working closely with patient groups to drive forward better understanding of unmet…

Spain Alba Ancochea of FEDER, the association that groups together Spain’s 337 rare disease patient organizations, explains how it interacts with both government and industry to the benefit of rare disease patients, the evolving situation for these patients in Spain, and her strategy for the future. Could you please start by…