January Greetings from ENGAGe Co-Chairs and presentation of the 2019 ENGAGe plans and projects

Dear Members,

we would like to greet you in the new year. In this short January´s Newsletter we would like to inform you about our plans for 2019.

As you may all know, ENGAGe EEG meeting was held on January 11-12 in Prague. These two days brought a lot of long discussions about 2019 ENGAGe plans and projects. We hope you would be happy with the results of the meeting the same way EEG members are.

Let us present you the progress on ENGAGe plans:

 

Gynaecological Oncology Day

Raising public awareness in matters of prevention, early detection, understanding of symptoms and treatment options in gynae cancers, healthy lifestyle has been on the ESGO (European Society of Gynaecological Oncology) agenda for many years. In order to raise the awareness, advocate and educate patient advocate, patients, their families and lay public, the ESGO established the ENGAGe (European Network of Gynaecological Cancer Advocacy Groups). ENGAGe represents today a network of patients advocates and patients in 33 European countries in Europe, and together with 2,500+ individual ESGO members, the health care professionals involved in prevention, research, treatment of gynaecologic cancers, represents a unique and exceptionally strong network of professionals and volunteers committed to fight against this silent killer. ESGO and ENGAGe wish to establish a public awareness campaign to raise awareness about the gynaecologic cancers and launch the 20th September as the Gynaecologic Oncology Day. 

We would need your help and cooperation for launch of the campaign to run the first GO day on 20th September 2019! We will bring you more detailed information on the next Newsletter.

 

PATIENT ADVOCACY SEMINAR (November 1-3, 2019 in Athens)

As usual, ENGAGe will have its yearly the Patient Advocacy Seminar, in the framework of the ESGO Congress, in November 1-3, 2019 in Athens. As the evaluation form from 2018 meeting showed that 2 days seminar was too short to cover the topics and for networking. As a result, EEG agreed for Athens Seminar to be 3 days. The draft agenda will be distributed beginning of March.

Poster presentation:  For the first time this year members of ENGAGe will be welcome to present their posters in the Congress Centre. The first step for this is to submit an abstract (a summary of your work) via the ESGO online abstract submission system. The best 3 patient advocacy abstracts will be selected for oral presentation. Professor Karina Dahl Steffensen is working on guidelines and instructions to help you write and submit an abstract for the conference. You will get more specified information in the following weeks.

 

LEAFLETS (Translation of existing and new ones)

ENGAGe will continue with the translations of the brochures into different European languages (Psycho-oncology leaflet, Palliative care leaflet, Nutrition leaflet, HPV leaflet, Uterine Cancer leaflet) for patient´s use. The procedure would be the same as with Ovarian and Cervical Cancer brochures. We would also try to get as much funding as possible to be able to call for the print grants again! It was also agreed that the new leaflet about Radiotherapy would be produced by ESGO member Prof. Elzbieta van der Steen-Banasik for ENGAGe members. Thanks to help all of you we also started to work on the “What to ask your doctor” leaflet.

 

CLINICAL TRIAL KNOWLEDGE PROJECT – ENGAGe and ENGOT Joint Project

We started working with ENGOT team on patient advocacy and patient involvement in clinical trials. We would bring you more info on next Newsletter.

 

Thank you for your efforts and we are looking forward to cooperating with you all! Are we ready for 2019?

 

Esra Urkmez and Murat Gultekin

ENGAGe Co-Chairs