NORD Advocates for Rare Diseases

Paul Melmeyer, Director of Federal Policy for NORD, the National Organization for Rare Disorders,joins us to discuss NORD’s advocacy activities at the local, State, and federal level. The pioneering organization in support of all patients with rare diseases first introduced the Orphan Disease Act in 1983, the year of itsā€¦

Continue reading

Global Childhood Cancer Advocate Gerry Tye in Sydney, Australia

Gerry Tye joins us from Sydney Australia to discuss the changes in the childhood cancer community over the past six years. A father of three boys, Gerry’s middle child Talin (age 5) was diagnosed with brain cancer in 2012, passing away shortly thereafter. Beginning in relative obscurity, Gerry’s advocacy forā€¦

Continue reading

NEW Information Regarding the Funding Opportunity Announcement (FOA) PAR-16-348

February 1, 2018,Ā  The NIH Gabriella Miller Kids First Pediatric Research Program Team Dear Colleagues- The Kids First Program would like to inform you that the Funding Opportunity Announcement (FOA)Ā PAR-16-348, ā€œSmall Research Grants for Analyses of Data for the Gabriella Miller Kids First Data Resource (R03)ā€ recently expired, and theā€¦

Continue reading

Sunshine Coast Daily: The Last Hope for Dying Children

by Jane Hansen, January 21, 2018, an Australian Outlet https://www.sunshinecoastdaily.com.au/news/last-hope-dying-children/3315273/ IT’S the last chance hospital for dying children – a Mexican treatment centre that Ā­refuses to publish results or co-operate with the medical community. But, when your daughter has a fatal strain of brain cancer, you will do anything –ā€¦

Continue reading