EuropaColon Making Waves

Transcription

1 EuropaColon Newsletter Issue 1, July 2012 Inside this Issue Making Waves EuropaColon is becoming more active in the policy arena for a number of reasons... CCPC 2013 EuropaColon will be holding its 2nd Colorectal Cancer Patient Conference... Report on European Colorectal Cancer Month ECCAM March Welcome to EuropaColon's first e-newsletter. We hope it will keep you informed about our recent and upcoming activities in our fight against colorectal cancer in Europe. We trust you enjoy reading it and we look forward to receiving your comments. Please feel free to let us know of any changes or improvements you might like to see incorporated in our second issue due in the autumn. We wish you all the very best for a relaxing summer and we look forward to working with you in the autumn. Kind regards Portugal Awareness Campaign EuropaColon Portugal launches innovative nationwide colorectal cancer awareness campaign... Jola Gore-Booth, Founder/Director, EuropaColon EuropaColon Making Waves EuropaColon is becoming more active in the policy arena for a number of reasons: We are disappointed by the considerable inequalities in cancer care that exist across and between EU Member States, in terms of access to formal population screening, medicines and also latest treatment and care Not all Member States have a comprehensive National Cancer Plan setting out their Government s position on cancer services; without this Plan being available, patients will struggle to get the best treatment and care Despite the 2003 Commission recommendations on colorectal cancer screening, 1

2 relatively few Member States have fully set up and are running formal populationbased screening programmes. (Formal population screening means officially inviting all eligible citizens to be screened.) These three points are essential considerations if people are to have access to the best available screening, treatment or care to identify and manage their colorectal cancer. EuropaColon will actively campaign to ensure these themes are embraced in all Member States. Working with our country partners we will extend and strengthen local patient advocacy skills, counting on the support and encouragement of MP s and MEP s to improve understanding of local health challenges and the inequalities that exist. We will be encouraging our affiliate and associate partners to develop close working relationships with MP s in their country. EuropaColon has produced a White Paper setting out the vision held by our affiliate and associate partners for the delivery of colorectal cancer treatment and care across the EU. This has been developed with the recommendations that have already been set out by the Commission in a range of different policy initiatives on colorectal cancer since The White Paper will be presented on the 13th November at an EU Parliamentary Meeting. Date for your diary! 13th November Improving Options for Colorectal Cancer Patients MEPs will be invited to a meeting where Key Clinical Opinion Leaders will report on the current progress with screening and colorectal cancer treatment in Europe. They will review clinical advances and their application locally. Over lunch MEPs will have the opportunity to meet with EuropaColon advocates from 21 European countries to discuss local issues and challenges. Details Announced for the 2nd Colorectal Cancer Patient Conference (CCPC 2) EuropaColon and the Global Colon Cancer Alliance are proud to announce the 2nd European Colorectal Cancer Patient Conference: DATE: 5TH AND 6TH JULY 2013 DURING THE WORLD CONGRESS ON GASTROINTESTINAL CANCER VENUE: THE INTERNATIONAL CONVENTION CENTER (CCIB) BARCELONA, SPAIN Following the highly successful CCPC in 2011, we will again be bringing together cancer survivors and their families, clinical colorectal cancer experts, health organisations and key opinion leaders from Europe and around the world, to discuss the latest challenges and advances in colorectal cancer (CRC). The programme will address the following key topics: Recent and future advances in CRC treatment Examples of best practice and the benefit for patients Challenges in access to best treatment and care in EU member states: the importance of lobbying Interactive workshops: o Can society afford innovative cancer therapies? o Investing in CRC prevention and control o Health a two way relationship? For further information and pre-registration please visit: 2

3 Please put the dates in your diary: 5th AND 6th July, 2013 in Barcelona An event not to be missed! European Colorectal Cancer Awareness Month (ECCAM) 2012 SPAIN EuropaColon Espana Affiliate Group EuropaColon Espana s key focus for March 2012 was membership recruitment During March two meetings were held in Madrid where patients were invited to attend. The meetings were aimed at trying to find out how patients would like to work with EuropaColon Espana and how they feel they could benefit from joining the organisation AUSTRIA Selbsthilfe Gruppe Darmkreb Associate Group The organisation was asked to present to the Allgemeines Krankenhaus H General Hospital Nurses group in Vienna on the work they do and the impact it was having on the citizens of Austria NETHERLANDS SPKS - Foundation for Patients with Cancer of the Digestive System Associate Group "Together we are strong against cancer" conquers European Parliament During ECCAM 2012 MEPs Wim van de Camp (CDA) and Frieda Brepoels (N-VA) joined forces with the Dutch Foundation against Cancer and the Flemish Organisation Stopdarmkanker to raise awareness of colorectal cancer in the European Parliament Around 3000 blue ribbons and campaign leaflets were distributed at the two main entrances to the Parliament. They also mailed 754 MEPs with campaign leaflets A press conference was held where a specially designed blue ribbon by top Flemish designer Tim Van Steenbergen was launched At the Parliamentary event that followed they launched a brand new online networking platform for colorectal cancer patients called "United Europe Against Colon Cancer". LATVIA Soon to join EuropaColon as an affiliate A press conference was held on the 14th of March addressing the alarming situation for colorectal cancer patients in Latvia and the restricted access to standard chemotherapy drug treatments. EuropaColon s Founder/CEO Mrs Jolanta Gore Booth was invited to present on the work of EuropaColon HQ and how patient advocacy groups can influence change. Mrs Gore-Booth urged the Latvian Health Ministry to review its decision on restricting access to even the most standard chemotherapy drugs 3

4 The press conference was attended by Irina Januma - chairperson of the patient association VITA, Janis Eglitis -Chief Oncologist in Latvia, Anatolijs Danilans Gastroenterologist and invitees from Ministry of Health and Saeima (Latvian Parliament) FINLAND Colores Associate Group ECCAM 2012 gave Colores the opportunity to reflect on the advances being made on survival rates for those affected by colorectal cancer through a announcement by Dr Helena Isoniemi, Chairman of the Board of Colores - Intestinal Cancer Society of Finland During March Colores launched a new book written by Christer Sundqvist a journalist who survived colorectal cancer called Terve mies sairastuu suolistosyöpään A Healthy Man becomes ill with Colorectal Cancer. All proceeds from the book will go to helping colorectal cancer patients PORTUGAL EuropaColon Portugal Affiliate Group Social Media Campaign Launched a targeted social media campaign at the beginning of ECCAM 2012 which ran throughout the month Supported by Social Media professionals the project aimed to increase the number of followers on Europacolon Portugal s Facebook pages to A low cost high impact campaign Corrida do Dia do Pai ( Father s Day Run) Fundraising and awareness event which took place on the 18th March in Oporto, supported by many professional organisations The number of runners was nearly A Press Conference to promote the race took place on 7th March in Oporto Continuous Home Care for Patients with Advanced Colorectal Cancer Project continues to be rolled out by a EuropaColon Portugal multidisciplinary team comprising of a Psychologist, Physician, Nutritionist, Social Worker and Nurse The service was promoted extensively throughout ECCAM March 2012 with the main aim of providing additional support to 50 patients with advanced colorectal cancer and their families, offering them access to the various specialties within the multidisciplinary team The service is free to the patients and their families and allows for continuous homecare service for this group The project is approved and supported by the Ministry of Health in Portugal There was extensive media coverage through a prime-time private TV channel during the month Healthy Eating in Schools Program - Official Launch The Healthy Eating in Schools initiative has received approval and support of the Portuguese Ministry of Health. It will run from January 2012 until March

5 New Colorectal Cancer Awareness Campaign launched in Portugal An exciting new awareness campaign has recently been launched by EuropaColon Portugal to promote the benefit of colorectal cancer (CRC) screening and early diagnosis. This will be the highest profile CRC awareness campaign ever organised in Portugal and involves the well-known Portuguese singer - Luis Represas - who has accepted the invitation to be the ambassador for this campaign. It will run from June until late August on all TV channels (public and private), printed media, radio, Facebook, web retail outlets, supermarkets and pharmacies. EuropaColon Portugal calls for the implementation of formal population screening for CRC - a disease that is highly treatable if diagnosed it its early stages. What is it? Play to prevent is a social responsibility campaign, having as its main objective the creation of public awareness on prevention and early diagnosis of CRC; this type of cancer having the highest mortality in the Portuguese population. How does it work? The public will be encouraged to visit the website and commit themselves to: 1. To inform themselves, their family and friends on symptoms and high risk groups for the disease 2. Apply for a screening test (from the age of 50) Who benefits from this? The Portuguese population in general will become better informed on CRC and alerted to the benefits of early screening tests. In addition, the district which succeeds in achieving the most subscribers to the website will be able to enjoy an exclusive Play to Prevent concert featuring Luís Represas. (EuropaColon Portugal will also receive a donation of 10 Euro cents from a sponsor, to further assist its efforts in promoting CRC awareness in Portugal, for each person signing up to the website). EuropaColon Launches New Website The EuropaColon website has been restructured and streamlined and all content reviewed and updated. Amongst information available is: EuropaColon Community: news and links to our 21 member groups Political Activities: latest information about EuropaColon s political work as well as EU Parliamentary and Commission activities Colorectal Cancer: key information about statistics, prevention, screening and treatment of CRC as well as living with colorectal cancer Patient Voice: information about our next Patient Conference in 2013, patient stories and patient rights Young Voices United against colorectal cancer: this is a new initiative to support the 5

6 Right-cli here to downloa pictures. help pro your pri Outlo ok prevente auto mati downloa this pictu from the Internet. Connect with us sadly increasing numbers of young people with colorectal cancer. It also includes a Forum which will provide a platform for young people affected by the disease to share their experiences and help support each other. Due to be launched July 2012 Please visit our new website and tell all your friends and colleagues about EuropaColon! EuropaColon. Registration No: Registered Office: 92 Palatine Road, London N16 8ST. info@europacolon.com Click here to join our mailing list This was brought to you by users of Team Tool Try Team Tool free for 90 days and make working together more effective. Please do not reply to this If you are having problems viewing this you can view an online version here If you do not wish to recieve further s from this source please click the following link Unsubscribe We take any misuse of our systems very seriously. If you feel you are being ed too frequently or being ed content you feel is not appropriate, please contact us. 6