Here in Sydney, we’ve just concluded our 2014 Annual General Meeting (AGM), the first to be hosted in Australia by our partners at VIVA! Communications. And, we could not be more excited about the outcomes! Early on, we got a heavy dose of local in-country updates from GLOBALHealthPR members, who reflected on accomplishments and challenges alike. Next, we used these responses to inform and refine our strategies moving forward. Our member agencies, from over a dozen countries, also shared the latest healthcare trends in their markets.
Most importantly, today is World Rare Disease Day and because of this we spent the greater part of the morning discussing the cold hard fact that medical research innovations alone cannot help patients with rare medical conditions. Our keynote speaker, David Kwasha, Managing Director of Alexion Pharmaceuticals, delivered a powerful message and queried why patients should be denied access to treatments for rare diseases. “Why should any human be discriminated against access to life-saving therapy simply because their disease is ultra-rare? Considering the majority of ultra-rare diseases are often the most life-threatening diseases seen in medicine, and commonly affect infants, children and young adults, we need much greater collaboration between government, industry and the general public in this exciting era in which science is unlocking breakthroughs,” said Mr Kwasha. He challenged partners to devise effective communications-driven strategies to address the dilemma of reimbursement for treatments for ultra-rare disease.
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