Research into rare premature aging disorder praised as a model of “what’s right” in biomedical research
Recently, a group of scientists, clinicians and patients gathered in a suburb of Washington, DC to discuss scientific progress in the study of a rare premature aging disorder. This disease, Hutchinson-Gilford Progeria Syndrome—often referred to as HGPS or simply progeria—is one you may not have heard of, yet. But the Progeria Research Foundation and families of progeria patients have been working hard to increase awareness and raise funds for research into this rare disease that results in death at an average age of only 13. Among the list of speakers at the conference was the Director of the National Institutes of Health, Francis Collins, MD, PhD and researchers from a number of Research!America member organizations. Continue reading →
On January 17, the Hudson Institute and the Global Network for Neglected Tropical Diseases held a briefing event to discuss their recently released report, Social and Economic Impact Review on Neglected Tropical Diseases. In addition to negative health outcomes, the report highlights the social and economic costs of these deadly diseases and argues that NTD control and elimination programs are a cost effective public health measure. For example, Michael Kremer, Gates professor of Developing Societies at Harvard University, discussed de-worming as an extremely cost effective development intervention. Several studies around the world, including in the southern United States, have shown that de-worming is worth our money and attention as it can lead to increased labor outputs, higher wages and better test scores among students.
Panelists at the event also paid tribute to many organizations that have altered the landscape of NTDs: the Rockefeller Foundation, whose campaign against hookworm has had a long standing effect in the American South and pharmaceutical company Merck & Co., who made an unprecedented commitment in 1987 to donate the drug Mectizan for as long as necessary for the control of onchocerciasis (river blindness). Other pharmaceutical companies have followed suit and drug donation programs are now being administered around the world. Of course, these programs would not be possible without collaborative partnerships between a host of public and private sector entities, from multilateral and government agencies to local on-the-ground operations. In addition to transforming the NTD landscape, lessons learned from these public private partnerships and other NTD control efforts have helped to inform other global health programs around the world.
Finally, Ellen Nagler, CEO of the END Fund, discussed the Fund’s private philanthropy model that allows the private sector to invest in NTD interventions for maximum impact. The END Fund provides capital resources and capacity to collaborate with governments and existing organizations to scale up treatments for individuals most at risk. Fifty cents per person to treat the seven diseases affecting 90% of the world’s poorest is a powerful return on investment. Nagler concluded that in order to raise the money necessary to reach our goals and eliminate these diseases, a lot more people will need to be educated about NTDs and their impact throughout the world. Please read Research!America’s summary of the report in tomorrow’s post.
-Jennifer Chow, Director of Global Health R&D Advocacy