Bootcamp - INCA

The Boot Camp for Research Patient Advocates managed by the INCA Research Committee is a 9-month online training program (June 2020-February 2021) for NET patient advocates representing member organizations of INCA.

The program aims to educate leading NET patient advocates, who would further share their knowledge in their local communities.

#INCABootCamp

Why Patient Research Boot Camp?

One of the core pillars of INCA is NET Research. This can come in a variety of ways; through education of what research is to our patient community, encouraging unique and practice-changing trials with our medical professionals and industry partners or helping to promote active trials for recruitment. We all know how important an increase in quality research will be to our goal, of earlier diagnosis and ultimately a cure of our global NET community.

The Research Committee is pleased to announce the launch of our inaugural INCA Research Advocate Boot Camp. Bringing together passionate NET patient advocates from around the globe, our online training modules designed by our delivery partners, Patvocates, take our participants through the many facets of research including drug development, statistics and why they matter, PROMS (Patient Reported Outcome Measurements) and QOLs (Quality of Life) and evidence-based patient advocacy. We are so proud of the 18 participants and know that they will take what they have learnt and put it into practice in their own countries.

We wish our class of 2020 all the best!

Boot Camp Participants

Amanda Stork

NeuroEndocrine Cancer Australia

My motivation to participate in the INCA Boot Camp stems from my personal experience as a NET Cancer patient. I was diagnosed in 2011 at the age of 29. I believe collaboration is key in any project, and the opportunity to have the patient voice heard is an invaluable step forward for the lives of NET Cancer patients. The chance to be able to communicate and engage with those involved in medical research design and ensure the patient voice is represented is so valuable. Participating in the INCA Boot Camp and learning about the area of research advocacy is such a wonderful opportunity.

Kate Quirk

Neuroendocrine Cancer UK

It is my hope that by participating in the INCA Boot Camp, I can learn how to be a voice for change, to use my skills to support others and to act as a bridge between clinicians and the unlucky patients diagnosed with this often misunderstood cancer. With the right support and access to the latest (fast changing) diagnostics and drugs, both parties can tackle this rare cancer together.

Michael Rosenberg

MENETS

Founder of MENETS – Middle East Neuroendocrine Tumor Society 2017, Co-Leader Metropolitan Carcinoid Awareness Group, Atlanta, GA USA 2009 – 2017. My background is Information Technology Program / Project Manage with have extensive experience in Organizational / Human Resource Change Management – I have strong relationships with the Israeli Ministry of Health and all NET experts. NLP , CBT, and ZEN practitioner. Poster presentations at ENETS 2020 and NANETS 2020.

Mary Zoeller

NET Research Foundation (NETRF)

I hope to improve my understanding of the role of advocacy as well as my knowledge of research and development to increase my effectiveness when advocating for better care and new treatments for NET patients. I also believe further education will increase my ability to be both concise and precise when representing the NET patient perspective to stakeholders.

Katie Golden

NeuroEndocrine Cancer AU

I have been advocating for patients for many years in so many different ways but advocating for research is so important and is something I really do have a passion and enthusiasm for, to learn so much more about as I have developed a greater understanding of how research works, through the work I have currently been doing for the NeuroEndocrine Cancer Australia.

Yoshiyuki Majima

PanCAN Japan

Unlike major cancers and their patient organizations, rare cancer groups have very little tools and resources to have a training in the areas the INCA Boot Camp offers. I would like to start a boot camp in Japan for rare cancer groups, so that they will become effective research advocates and lobby the government for more funding for rare cancer research.

Charmaine Chantler

AMEND

I am relatively new to patient advocacy and am therefore keen to expand my ‘vocabulary’ to help to continue to improve the service I provide to my fellow rare endocrine syndrome patient members of AMEND.

Linda Rose Krasnor

Pheo Para Alliance

I believe that advocacy requires excellent multi-directional exchanges of information among advocates, patients, clinicians, funders, and policy makers. My goals, objectives, and expectations for the Research Advocate program are to learn the skills, develop general strategic approaches to advocacy, and access the resources that would help me to effectively act.

Stephanie Alband

Pheo Para Alliance

I believe my experience as a patient advocate for my daughter, in addition to my professional experience as a patient advocate for the pheo para community, and the rare disease community as a whole, can be greatly enhanced by learning about this process. I look forward to taking this newfound knowledge and training other pheo para community members to build our pheo para army.

Kennedy Rotich

ANECS

I am dedicating to commit myself as an active patient advocate in the field of Neuroendocrine Cancer as nominated by ANECS (formerly AZNETS)-AHADI. I am determined to develop professional advocacy skills in the field of neuroendocrine cancer.

Mark McDonnell

NET Patient Network – Ireland

I want to work towards applying my skills along with my knowledge of NETs to advocate for a fair and internationally recognised best-practice service to both newly diagnosed and existing NET patients in Ireland. I want to ensure that internationally recognised treatments and diagnostics are made available to all NET patients in the country and that every NET patient sees or has their case reviewed by an acknowledged NET specialist.

Esteve Cusidó

NET España

I love science and I am willing to learn the scientific part related to NETs, to be able to offer information to those who need it, whether other patients or other types of groups. I think that information is always necessary, and specifically in Spain, we need expert patients who can help especially in terms of research.

Mari Sandvold

CarciNor

My motivation is first and foremost to help raise awareness about a little known cancer diagnosis. Better understanding of how to present the interest of CarciNor to both the decision makers and the media in Norway is important, especially for a small organization like CarciNor, how to use the few resources we have in the best possible way.

Fabienne Pfyffer

Victory NET

My skills and experience in relation to patient advocacy are very limited and this is why I would like to attend this INCA Boot Camp. To this day our Foundation mostly supported research, training specialised NET patient nurses and we had the NPF excellent handbook translated in German and French. We are determined to develop advocacy skills and expect that the Boot Camp could help our Foundation achieve this.

Jackie Herman

CNETS

My motivation to participate in the INCA Boot Camp comes from a place of wanting to do more to help Canadian neuroendocrine cancer patients gain access to treatments and to support more research into neuroendocrine cancers. At CNETS we are currently doing the best we can with the knowledge and resources that we have but in the absence of more money to directly fund research projects, we are asking ourselves what else can we do raise the profile of neuroendocrine cancer research in Canada and promote it, thereby directly benefiting our patient community.

Ron Hollander

INCA

On behalf of INCA, I have had the opportunity to convene and/or participate in the kinds of collaborative meetings that lay the groundwork for more patient engagement in research. As a result, I see the need for patient advocates to have clear understanding and consistent use of the tools needed to effectively communicate and influence regulators, industry and medicine in these processes. I would hope that the Boot Camp would not only provide this knowledge, but also help us develop a network of engaged advocates who can share best practices, learn from each other, and support effective patient engagement in their respective countries.