News from our members
On February the 2nd 2019, by the occasion of World Cancer Day, were launched the first regional patient relevant outcomes of cancer care survey in 12 countries! The Czech Republic (with its patients’ organisations Onko Unie & Veronica) is one of them:).
By 11.02.2019., more than 1500 patients have already completed the survey: Albania - 44, Bulgaria - 59, Bosnia & Herzegovina - 56, Czech Republic - 116, Croatia - 391, Hungary - 439, Macedonia - 111, Poland - 45, Romania - 21, Serbia - 29, Slovakia - 65, Slovenia - 165. Together, we can help patients in the region to have better outcomes of oncology care!
The collected survey data will be used in all advocacy activities of cancer patient organizations and show possible inefficiencies of cancer treatments. It should depict the situation in every country of the Region separately, but also the overall regional one.
Our aim is to collect, analyze and systematize the data and present the results on the 3. Joint Action of Cancer Patient Organizations in CEE Countries (JACPO) meeting in June 2019. Please launch the survey in your countries today!
Veronica - billboard campaign
January is a month of cervical cancer awareness.
The campaign has a controversial headline: 400 women die unnecessarily every year.
Since this disease is almost 100% preventable, we carried out a campaign in the Czech Republic to talk about three main things women should do for themselves.
- have regular gynaecological check-ups
- ask for an HPV vaccination
- have HPV DNA testation.
Prague was flooded with billboards and city lights, we do not have statistics yet, but we are confident in 2 years-time the number of diagnosed women will have shrunk.
France – IMAGYN: Campaign for check-ups
IMAGYN has launched a campaign in France, to encourage women to visit their gynaecologist once a year. In France, a lot of surnames are used for female private parts (poster attached). So the campaign says: "No matter what name you give to it, a gynaecological consultation help to prevent gynaecological cancers". This poster will be at first in about 2000 gynaecologist's cabinets, and then broaden to general practitioners, biologists for next 3 years.
Georgia – the Patients union activities
Hosted a UICC Preparatory Mission involving "Alliance Advocacy" and Supporting -Marjanishvili Theater
The memorandum was signed between the Ministry of Health and the Union and UICC within the framework of the C/Can 2025 project
GPU supporters-famous persons were dedicated to the Oncological topic the relevant event (telecast, drawing, mini-performance
ENGAGe's fact sheets are published in Georgian language
The memorandum was signed with the Tvildiani medical university and students were involved in the informational-educational campaign
The Memorandum was signed with "Friendly Clinic" where women's health cabinet and women's program were opened and distributed
The process of concluding agreements and memorandums with women's organizations and institutions continues to give instruction and information meetings
Greece - K. E. F. I. - “YES to life YES to Prevention” campaign
On World Women's Day, Erifyle KEFI of Athens organized a series of actions in order to raise public awareness on Gynecological Cancer.
On Saturday March 2, we said “YES to life YES to Prevention”. At the Mall of Athens in a specially-designed venue at the city shopping center, women of all ages had the opportunity to learn about the ways of prevention like the preventive vaccination and other ways; questions and concerns were answered by valid experts; informative material was given. They were asked to give us their reason why prevention is vital.
At the same time, an online survey was conducted to capture women's awareness of preventive control, the results of which will be published shortly.
I am happy to say that a big percentage of the young girls that visited us had already been vaccinated for HPV.
On Thursday, March 7th, a conference was held in the Amphitheater of the Hellenic Pasteur Foundation, where distinguished speakers informed us on various matters like “When is possible to have Fertility Sparing” “The latest approach on ovarian Cancer” “Endometrial Cancer” “HPV vaccination and ‘Grecoself’ study” (on self DNA Testing). A former patient shared her story and our clinical psychologist talked to us about the changes on the sexual life of a gynecological cancer patient.The event was broadcast live on the internet and we can find them at our You Tube channel.
And last but not least on Friday 8 of March, KEFI volunteers visited the oncology clinics on 4 Athenian Hospitals and offered flowers and smiles to women who battle cancer telling them that we are with them on the difficult road that they are walking.
Hungary - Malow Flower Foundation - XIII. European Cervical Cancer Prevention Week
120 cities, villages made campaign with the Mallow Flower Foundation
In every year from 2014 the Mallow Flower Foundation organizes the ECCPW in Hungary.
Each year the Mallow flower tries to make a very colorful, creative campaign ( last year: Powwowing Panties Pub) which is really good to bring closer the people, women, men to the cervical cancer, HPV topics, as we all know the intimacy and stigmas of these fields.
In 2019. they took a huge Hungary map in a shopping mall and on a Saturday people could come and beading bracelet from pink, white pearls . All the bracelets were collecting in a huge vase and following the program the Mallow Flower sent them to several hospitals gynecological departments for the women who are in the hospital, with a message: You are not alone!
From the Ministry of Human Resources the Health State Secretary had a speech at the program and promised that besides the girls HPV vaccinating program the Hungarian boys will have the possibility as well.
This is a big step, as in Hungary from 2014 the girls can have the HPV vaccine.
It was a hole country program, 120 cities, villages connected in and in all places people made bracelets and had program.
The Mallow Flower Foundation granted the leaflets and presentation for all cities.
You can find the main program here.
Here are some cities:
Italy – Acto Onlus - Social Media campaign: “Together we can find a new way to talk about cancer
#leparolechevorrei (“Words I would like to listen”) campaign
Together we can find a new way to talk about cancer
Period: end october/early december 2018
Videos that reached 1.097.000 people, with more than 52.000 visualizations and 41.579 interactions on Facebook.
These are the results of the “Words I would like to listen” (in Italian #leparolechevorrei) campaign on social media, really good if compared to the numbers of ovarian cancer in Italy: 50.000 women living with it, 5200 new diagnosis/year.
We were driven by the suggestions of a patient group: women with ovarian cancer would like to talk about cancer in a different way. The word used up to now: “battle”, “warrior”, “silent killer”, sketch a military language that most of our patients dislike.
We realized that words are important, they can modulate emotions and change behaviours. They can kill or save. Therefore we launched a social media campaign to ask patients and caregivers to tell us how to talk to a woman living with ovarian cancer.
Two video in motion graphics were produced: the first video launched a “call to action”, the second one reported words and sentences which patients and caregivers think can be more helpful and soothing.
Serbia – Milica - Campaign “Hair”
This year Pantene, along with my girls from Women’s Center Milica, started a campaign named “Give strength”. This campaign focuses on giving support to women with breast cancer in order to feel strong, the women who lost their hair while going through chemo. The campaign started with hopes that these women will have the opportunity to get wigs from natural hair.
Sweden – The network against gynecological cancer - Lecture evenings about gyn-cancer
We have evenings about gyn-cancer in four Swedish cities beginning April. We expect to reach round 600 people. People with gyn-cancer, their relatives and people working in the hospitals or with rehabilitation or people in general. We have short lectures between 5 pm to 8 pm. The lectures are about prevention like better screening program, know your family (about heritage). One section is about care like complementary and alternative medicine, palliative care, sex and cancer. This year we lift vulva cancer so we have a section about that to. The lectures are mixed with short filmed (3 min) patient stories. At the end we have a section about news in treatments. All lectures are between 7-12 minutes depending on subject. We have used that format for some years now and it has been successful. Long enough to get the message from the lecturer but not allowing them to go too deep into the subject.