Engagement with Oncology Patients and their Representatives
As part of the GYNOCARE COST Action, there was a very good collaboration with numerous patient advocacy groups involved in cancer, especially the rare gynaecological tumours.
MC members collaborated with the Fondazione ANT (Associazione di Tumori Onlus Italia) in Italy, thanks to Prof Francesco Pegreffi from the University of Bologna. This led to two important publications:
- Paruto G and Pegreffi F (2022) La Telemedicina nell'Assistenza Terapeutica e in particolare Oncologica. Bologna University Press. This open access book was launched during a hybrid satellite meeting held in collaboration with GYNOCARE and the 'Fondazione Carlo Rizzoli per le Scienze Motorie', the 'Fondazione Assistenza Nazionale Tumori (ANT) Italia Onlus', and the 'Fondazione Cassa di Risparmio' in Bologna in September 2023. Click here to read the full text of the open access book.
- Pazzaglia C and Pegreffi F (2021). La Salute del Caregiver. Bologna University Press. Click here to read the full text of the open access book.
Collaboration with the ALIVE Charity Foundation
Members of the GYNOCARE Consortium have been working closely with the ALIVE Charity Foundation, who in turn raise funds to support research in the field of cancer.
Together with the Research, Innovation and Development Trust (RIDT) in Malta, dissemination activities including symposia are held, aimed at patients, patient advocacy groups such as EUROPADONNA and all the relevant stakeholders. One example is the Cancer Symposium held under the patronage of Her Excellency The President Emeritus of the Republic of Malta.
Collaboration with the National Alliance for Rare Diseases Support
GYNOCARE COST members work in close collaboration with the National Alliance for Rare Diseases Support in Malta. The aims of this National Alliance are: to provide support and information to patients and relatives going through a crisis related to the mentioned illnesses and to other Alliances working in the field of rare diseases; to educate society in respecting, accepting, and helping as much as possible patients of rare diseases and their relatives; to form part of any national or international association whose aims are similar to that of the Alliance; to raise public and political awareness on rare diseases and conditions; and to encourage and promote research on rare diseases and conditions.
Among the numerous activities that GYNOCARE members are involved in, include the Annual Colloquium on Rare Diseases, which is held in collaboration with the National Alliance for Rare Diseases Support, the Office of the President of The Republic of Malta and the University of Malta.
Collaboration with ESGO-ENGAGE
Established in 2012, the European Network of Gynaecological Cancer Advocacy Groups is an ESGO network of European patient advocacy groups representing all gynaecological cancers (particularly ovary, endometrial, cervix, vulva and rare cancers).
ENGAGe objectives include:
- Facilitating the development of national gynaecological cancer patient groups in Europe and to facilitate networking and collaboration between them;
- Disseminating information and share best practices to empower patient groups and improve the quality of care across Europe;
- Increasing patient representation in ESGO activities by education on current research and health policy;
-Advocating patient care policies practices and access to appropriate care at both national and European levels; and
-Educating patient groups, health professionals, the public and health decision makers.
Dr Sharon O'Toole, leader of WG2 of GYNOCARE COST Action is very actively involved in ESGO-ENGAGE. During all the conferences and training schools organised by the GYNOCARE COST Action, she was always at the forefront in advocating for building patient partnerships.
Annually, members of GYNOCARE COST Action advocate for raising more awareness on rare gynaecological cancers on World Gynaeoncology Day and on World Ovarian Cancer Day.
Collaboration with the Bulgarian Breast Cancer Association (BBCA)
The MC member from Bulgaria, Dr Mariela Vasileva-Slaveva is the Director and Founding member of the Bulgarian Breast Cancer Association (BBCA). Together with her and the participants of the different working groups of the GYNOCARE COST Action, a successful 5 day event consisting of a training school and a conference were held at Sofia University in Bulgaria. This included a whole session dedicated to patient advocacy, with translators being available in order to ensure outreach. Among the speakers, there was Yulia Panayotova, who spoke about the role of women in inspiring other women to address inequalities in access to cervical cancer screening and Dr Margarita Tareyn, who stressed on the importance of effective doctor-patient communication.
Collaboration with IDIWAKA
Cervical cancer is the 3rd most common cancer worldwide among women. Uganda is the 7th country with the highest incidence of cervical cancer in the world and constitutes 40% of all cancers in the country, with high mortality among women aged 25-65 years. This is due to limited access to screening and preventive measures, which could reduce its incidence by up to 80-90%. Therefore, GYNOCARE has collaborated with Dr Cristina Clare Gallego de Largy, MC member from Spain, who is part of IDIWAKA. Together with her team from IDIWAKA, she has embarked on a mission on this new adventure with the aim of reducing mortality from cervical cancer in Ugandan women. It began at the Padre Pio Health Center III, Kamwenge (Uganda) , seeking to promote health and train the female population on the importance of HPV vaccination and carrying out free HPV tests. In addition, training will be carried out for local hospital staff so that in the long term they themselves will continue the project.