HENARAN charitable foundation is a national cancer patient advocacy organisation in Armenia – a small land-locked country in the South Caucasus with 3mln population not having adequate access to cancer care. I have the honour to lead HENARAN.
The first contact between Inspire2Live and HENARAN was established by Peter Kapitein in June 2019, and a year later in July 2020 I joined Inspire2Live as a Patient Advocate. The Armenia Hub of the World Campus was set up. In unprecedented conditions of Covid-19 imposed lockdown across the world, we managed to thoroughly discuss lots of issues of common interest and concern and agreed on a number of areas where Inspire2Live would assist with expertise assistance, connections, sharing experience, etc.
One of the projects we actively discussed and plan on implementing in 2021 is establishing a cancer registry based on the electronic health records system at the National Center of Oncology (NCO). Several virtual meetings with specialists in this field and their commitment to assist led to the development of a project proposal that is due submission for funding to Data for Health (D4H) Initiative’s Global Grants Program on January 15, 2021. When approved, the project envisages potential collaboration with the Netherlands Comprehensive Cancer Organization (IKNL) and/or the Netherlands Cancer Registry (NCR) as an international partner for project implementation. One of the project outputs will be the training materials on cancer registration that will be accessible to other members of Inspire2Live network.
The other project—pending invitation to submit a full proposal to Pfizer—is focused on improvement of metastatic breast cancer care in Armenia, whereby connection with a highly-qualified Dutch researcher was mediated by Inspire2Live to facilitate the project design and development for potential submission.
Another project, again pending funding, is focused on establishing the first rehabilitation center at the NCO for cancer patients in Armenia. When funding is approved, we will proceed with the center’s construction works, which then will be followed by engagement and assistance of international experts on training local staff and introducing rehabilitation programs locally. As a result of this dream project and the policy change I intend to advocate for, all cancer patients in Armenia will have free access to rehabilitation services during and after cancer treatment—something that doesn’t exist in our country with limited resources and has absolutely no other chance to be realised in the post-war Armenia.
We can find financing to introduce best practices and new approaches, but in most cases these relate to new practices and we need professional assistance for their implementation as there is no in-country expertise for that. And that’s what Inspire2Live network does: inspires to live and work and connect with peers and exchange experiences. For me Inspire2Live is the light in the complete darkness of the fight against cancer in Armenia, and since July 2020 I feel myself as the Batman fighting the evil locally but being supported globally. That is an amazing, and a beautiful sensation.
Patient Advocate Inspire2Live