This November the Pheo Para Troopers will gather in Syracuse, NY, on the campus of SUNY Upstate Medical University to collaborate with experts, patients, and caregivers. Our mission has always been to empower, innovate, and advocate pheo and para patient wellness. There is no better place to do that than at a conference! With the help of technology, the Troopers are looking forward to expanding our conference reach to everyone around the world.
There will be two ways to attend the conference: in-person and online.
Meeting fellow patients and caregivers is a wonderful experience. The inspirational bonds formed during the meet- and- greet are unforgettable. Having the ability to sit in large group discussions helps patients and caregivers both understand that they are not alone. It also assists the Troopers to focus our attention on support, growth, and outreach, so that in the future we can research and promote issues that matter to patients and caregivers. See what past participants have said about our conferences:
While we always recommend attending patient conferences in-person, we understand traveling to a conference is often impossible. The Troopers want to help those who are unable to attend in-person by giving them a chance to ask questions, as well as listen to all the wonderful presentations that are filled with information you cannot get anywhere else. This year we are offering an online Webinar service that will link you to the conference from your own home. No need to make travel plans, save for hotel fees, or worry about having limited mobility due to health issues! Sign on, listen in, and ask questions. We’ll be there on the other side to voice your questions to the experts and get you answers.
In the past, we have seen the benefits of holding conferences devoted to the patients. Our first year, we learned that genetic testing needed to play a larger role as did understanding the results of the tests. We also formed a Genetic Testing Fund to aid patients in the U.S. that were not covered under insurance. As we forged relationships with science teams from multiple hospitals to communicate theories, ideas, and research outcomes, the Troopers helped research the significance of the different mutations and published information in our newsletters. We could not have done that without previous conference input from all who had attended.
Medical professionals gain an enormous amount of information from our conferences as well. Many doctors will only see one or two pheo/para patients during their entire time practicing medicine. Hearing from multiple patients directly and getting grassroots accounts of what it is like to live with pheo/para is vital to the growth of patient- doctor interaction. This communication may save the lives of many undiagnosed patients out there. If you are a medical professional and wish to attend the conference, please send an email to email@example.com.
A separate website has been set up to show details of this year’s conference. It provides a one-stop place to learn about our speakers, view the program, and register for the event. The Troopers look forward to seeing you, both in-person and virtually. We are aiming to make this the best pheo/para conference of the year because it is “For the patients, by the patients.”
Below: Images from 2014 Trooper conference