Tagged with Rare Disease

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…

Poland Mirosław Zieliński, president of the Polish National Forum for the Therapy of rare diseases (ORPHAN), the representative voice for 35 Polish rare disease associations, discusses the implications of the introduction of a national rare disease plan and the need to improve rare disease diagnostics. Furthermore, he highlights the importance of…

Canada Clarissa Desjardins is the founder and CEO since 2011 of Canadian biotech success story, Clementia Pharmaceuticals. She explains the different milestones of her company and her priorities moving forward. She also gives her insights on the entrepreneurship environment in Canada and advice on how to make it even more compelling…

Japan Makoto Suematsu, president of the Japan Agency for Medical Research and Development (AMED), discusses AMED’s successful unification of Japan’s previously disparate systems for medical research funding; the strategic significance of the country’s strong footprint in regenerative medicine and rare diseases; and the organization’s internationalization strategy, propelled by the push to…

Austria Rudolf Widmann, CEO and founder of AOP Orphan, the first rare disease-specific European company, discusses the overriding goal to ensure rare disease patients are matched with the correct treatments and the importance of open dialogue with specialists and patient groups. Furthermore, he highlights the need to differentiate health technology assessments…

Austria Dr. Wolfgang Harrer, regional manager of Chiesi Central and Eastern Europe (CEE), discusses the challenges of managing the region’s diverse cultural differences and the importance of CEE within global operations. Furthermore, he points out the factors influencing the influx of innovative drugs into Austria, especially in rare diseases, and highlights…

Austria David Kasper, CEO of ARCHIMEDlife, an innovative Austrian company focused on novel laboratory diagnostics, discusses the innovative solution of a dried blood sample in daily routine diagnostics and novel assays as well as the intricacies of working in rare diseases. Furthermore, he provides an insight into the company’s legacy project…