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.
A child with Progeria usually passes away from a heart ailment by age 13. The good news is that our client, the Progeria Research Foundation, initiated clinical trials several years ago, and published results in the past year demonstrating the effectiveness of a Farnesyltransferase inhibitors (FTIs) as a treatment for Progeria.
Alexion’s commitment to rare diseases, David explained, stems from the need for a collaborative approach to tackling rare and ultra-rare diseases. “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.
2-1/2 Really “G’Days” Down Under!
For now, my thanks to the hosts of the AGM in Sydney, Kirsten Bruce, Paul Jans and VIVA! team members Josie Schwarzer, Joni Thomes, Ruby Archis, Mark Henderson and others. My Spectrum colleague, Andrew Bailey, and I appreciated VIVA!’s attention to detail in planning and conducting every aspect of the meeting. The VIVA! team seasoned each of our 2-1/2 days with just the right mix and dose of Aussie native and British colonial history, culture and business perspective. The VIVA! office is located in Mosman, a tidy, historic outcropping of former military base buildings on a hill overlooking Sydney. Well worth a visit to take in the sights and charms of their distinctive setting.
Uncommon Health PR Talent
This year’s Sydney meeting marked our 13th consecutive annual meeting of GLOBALHealthPR partners. Looking around our meeting room at my peers, themselves owner/managers at leading PR firms in countries ranging from Singapore to Portugal to India to Argentina, I thought about what a privilege it is to know and work with successful business people like Paola de la Barreda of PR Partners in Mexico, and Kirsten Bruce, of our host firm VIVA!. These health communications strategists are truly at the top of their class. They understand better than anyone else – they’re at the helm of science-driven communications strategies, based on years of experience conducting successful pharma and other health industry PR campaigns in their respective countries. No one knows the Argentine health market better than Eugenia de la Fuente and her business partner at Paradigma PEL Communications Laura Torres. My friend and former boss from Hill and Knowlton and InterScience, Dr. Ken Rabin, now represents Poland-based Alfa Communications, making his home in Warsaw. Jorge Azevedo of Portugal partner Guess What was also in the house, and brought with him the latest news from the Iberian Peninsula and Mozambique, where Guess What opened an office last year. And Dinesh Chindarkar, partner at MediaMedic, is the unofficial but widely undisputed health social/digital media “wonk” in India.
Hearing each of our partners present his or her insights on what works and what doesn’t work in each market reminded me of how truly special our GLOBALHealthPR partnership is.
As I write this blog, I’m somewhere over western Australia, flying to Singapore for three days of client and prospect meetings with our partners in Singapore (who also journeyed to Sydney), Patsy Phay and Yap Boh Tiong, principals of Mileage Communications Group. Mileage’s footprint also includes Vietnam, Malaysia, Thailand, Indonesia, Myanmar and China.
I’ll file an update in a day or two. It’s my first time to Singapore, so stay tuned!