World Rare Disease Day

How appropriate that GLOBALHealthPR Australia partner VIVA! Communications chose Alexion’s David Kwasha to share his personal and Company views on rare diseases on World Rare Disease Day during our two-day annual general meeting in Sydney, Australia last week.

He challenged our group of leading, independent health-focused public relations firms to do more to advance the cause of rare diseases, and in particular, ultra-rare diseases.

In the U.S., a rare disease affects fewer than 200,000 persons, and an ultra-rare disease, fewer than 6,000.

David seemed happy to know that GLOBALHealthPR has already supported the location and identification of nearly 100 percent more children with Progeria, most definitely an ultra-rare disease in which children age rapidly. To date, about 110 children have been identified living with Progeria, an increase from 50 or so just five years ago. We titled our campaign “Find the other 150” because at the time, about 200 Progeria children were estimated worldwide. [Read more…] about Realizing Rare Opportunities

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.

[Read more…] about GLOBALHealthPR Unites Down Under on World Rare Disease Day