Tagged with Rare Disease

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…

Portugal Alnylam, pioneers in the RNA interference field, seek to bring their revolutionary medicine across Europe, and in particular Portugal before 2020. In this interview the new General Manager for Spain and Portugal, Alicia Folgueira Lopez, a rare diseases authority, discusses how to build an affiliate from scratch, the synergies across…

Spain Jose Manuel Rigueiro, general manager of the Spanish affiliate of Actelion, discusses the lack of trust between health authorities and the industry and the challenges of launching new orphan drugs in such a fragmented healthcare system. He highlights the successful launch of Uptravi® and his commitment to avoid business disruption…

Portugal Carla Benedito, general manager of Shire Portugal, provides useful insight into the rare diseases landscape in Portugal. Carla discusses market access models for innovative and rare treatments, encouraging dialogue between industry and government, and the touching nature of working for a pharmaceutical company that knows all of its patients by…

UK 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 biotech company in just a short period of time. Currently active in both the UK and Europe, EUSA is set to further expand internationally, notably in…

Canada Bob McLay, vice president and general manager of Sobi in Canada, discusses how innovation and collaboration with regulators and payers are helping Sobi to bring its medicines to Canadians suffering from rare diseases, while emphasizing the importance of an adequate rare disease framework to streamline this process in the future.…

India Swati Jajodia, managing director of Swati Spentose discusses her commitment to tackling underserved diseases and the company’s approach to bringing pentosan polysulfate to global markets while working with Key Opinion Leaders and CMEs in raising awareness about interstitial cystitis (IC).    Could you please introduce Swati Spentose to our international…

Switzerland Jürgen Pohle provides both a fascinating and open account of the latest movements of Neovii; a company that possesses the ability to make decisions at the speed of a startup but also has a heritage dating back to the 1970s. After an outstanding career spanning 25 years with Big Pharma…

Canada Marc LePage, president and CEO of Genome Canada describes the early days of the organization and talks modern day plans, such as personalized diagnostics for rare diseases, international alliances and genomic data collection and sharing.   Marc, you helped pioneer the creation of Genome in 2000 and led Génome Québec…

Austria Joy Ladurner, co-director of the NKSE (National Coordination Center for Rare Diseases) in Austria, discusses the rationale behind Austria’s prioritization of rare diseases and its leading role in the field. Austria launched a national action plan for rare diseases, the NAP.se in 2015. NKSE has played an instrumental role in…

Canada Eric Tse, general manager of Shire Canada, highlights the affiliate’s exciting journey over the past four years, including new office location in downtown Toronto, and the launch of six new products in 2017 alone; Shire’s portfolio of innovative solutions across rare diseases and other areas like attention-deficit/hyperactivity disorder (ADHD); and…