Linda Rose Krasnor is a Board Member; Board Liaison to Medical Advisory Board, Peer Support Group Facilitator for Pheo Para Alliance and a participant in the INCA Boot Camp for Research Patient Advocates.
- Why did you enroll in the INCA Boot Camp, Linda?
My personal experience with paragangliomas forms the most basic reason for enrolling in the Boot Camp. I was diagnosed with bilateral glomus vagale tumours and three members of my immediate family also have paragangliomas. Our family’s frustrations in finding up-to-date information about the disease, securing informed medical treatment, and sorting out the generational implications of our genetic status, has provided impetus for advocacy work. Another motivation to learn about patient advocacy comes from the problems faced by others suffering from this disorder; for example, I have heard painful stories from patients and their families during our peer support calls and on our Facebook page. These patients and caregivers are struggling with getting doctors to take their symptoms seriously, obtaining a timely and accurate diagnosis, finding knowledgeable physicians to manage their treatment, obtaining affordable diagnostic tests and medications, and dealing with the anxiety associated with their conditions. As sufferers of a rare disease, they often feel abandoned and helpless. I would like to help these fellow patients and their families get the resources they need and deserve.
- Who do you perceive to be your partner in this effort to promote active patient involvement in NET research?
My primary partner is the Pheo Para Alliance. The Alliance’s mission is to empower patients with pheochromocytoma or paraganglioma, their families, and medical professionals, through advocacy, education, and a global community of support, while helping to advance research that accelerates treatments and cures. Active patient involvement is a priority for the Alliance. I also hope to establish partnerships with other organizations involved in NET research, as well as exploring working relationships with foundations, commercial, or academic units.
- The most important thing you learned from the webinar this month?
I have learned that patients often are not meaningfully involved in the design, priority setting, and conduct of research that will affect them. However, I have also learned there are international resources available to assist patient groups to exercise the influence that they deserve – an influence that will not only improve their individual care but the entire research endeavor.