NET Cancer Day
May 19 2014
Instigated in September 2009, the Pheo Para Troopers formed to provide support and advocacy for the small and geographically disparate metastatic pheochromocytoma and paraganglioma community. Pheochromocytoma and paraganglioma are very rare NET’s that manifest as adrenaline-producing tumours throughout the body. The disease occurs in its metastatic form in less than three in a million people per annum in the developed world and is managed via modern medical techniques rather than cured.
Located in the U.S., 60 – 70 % of the Pheo Para Trooper membership originates in North America. We wish to extend our reach and support throughout the world, by providing authoritative and up-to-date information to patients, and actively promote the disease to governments and doctors whilst networking and co-operating with as many other similarly minded NET patient groups as possible. Our motto is, “For the patients, by the patients” and we believe there is strength in bringing our globally disparate patients together.
We launched our re-designed web site (pheoparatroopers.org) in January 2014 and publish our own well-regarded newsletter called the Drop Zone, which is also translated into Japanese, Dutch and German. In addition, we have constructed the largest global directory of physicians who are conversant to the best practice, diagnosis, and treatment of our disease., which went on-line in February of this year.
The Troopers are also very active in developing our own patient and physician conferences and webcasts, the first of which will take place on Saturday 28/6/14, in Washington DC. During 2015, we hope to organise our first European patient conference and will also be attending the International Symposium on Pheochromocytoma and Paraganglioma, to be held in Kyoto, Japan during 17th-20th September. This event occurs every 3 years and is the focus of the publication of significant developments in research or treatment relevant to our disease.
Other ongoing projects include the formation of a de-identified Pheochromocytoma and Paraganglioma patient registry. This registry has a number of research institutions actively involved in its formation and is intended to allow researchers better access to larger sample groups, which will allow much better trend analysis within the disease. The registry intends to facilitate greater collaboration and integration between research centers.
Currently, we have appointed active patient liaisons within the UK and Ireland and are linked with patient groups in Spain and the Netherlands. We intend to achieve a global network by appointing Trooper representatives within each nation, or by affiliating to established patient groups already active there. We welcome contact with any organization or individuals who might assist with this or have a similar wish to promote our patients interests within the world of NETs and beyond.
This article was submitted by the Pheo Para Troopers.