The Focus On Rhabdo Advocacy Group has begun a series of initiatives that we feel will educate both families, pediatricians and primary care physicians on various aspects of this rare and awful disease and provide necessary funding for innovative research projects targeted at making rhabdomyosarcoma a universally survivable disease.
A Bio-Specimen Donation Program – where we’re asking all rhabdo patients that are undergoing a surgical procedure to have a sample of their tumor sent to one of our cooperating laboratories. Rhabdo is a very rare disease and the more tissue samples that we can obtain and test, the faster we might find a cure. Please click here for more information on the program.
A Web-Seminar (Webinar) Series – a monthly information presentation on various rhabdo-topics by members of our prestigious Advisory Council. All of our webinars are free and everyone (registered on our site) is invited to participate. The list of upcoming webinars is located in the right sidebar along with the link to our Webinar Registration page. For a detailed list of previous and up-coming programs, please click on the paragraph heading.
How Rhabdo Might Present – A ‘Presentation Book’ – written for pediatricians and primary care physicians describing how rhabdo has presented in patients; information to help them identify potential rhabdo occurrences and get the patient into care faster. We all know that delayed diagnosis results in poorer outcomes.
A Foundation Consortium – creating a partnership with existing foundations that have a rhabdo focus to work together to fund various research projects. More information to come shortly.