World CML Day: Activities 2015

WCMLD 2013 0922logo día mundial LMCExciting initiatives of CML patient organisations and professionals were held on World CML Day to create awareness about the needs of patients affected by Chronic Myeloid Leukemia and their families. Read here what the groups did around 22 September 2015!

 

World CML Day Activities 2015

  • Germany:leukaemie-online-logo For this year´s World CML Day members of German Leukämie-Online will meet in Munich for a two-day-meeting. Even if the meeting is not taking place around September 22 due to conflicting schedules, we will promote World CML Day intensively. Two exciting days of fun and learning lie ahead of us! We are glad that we could again win our highly valued friend Prof. Andreas Hochhaus for the lecture part. Lectures will focus on clinical trials, therapeutic options and new methods of diagnosis in CLM and other leukemias. In the evening we will all move to the "Oberanger"-theatre in Munich´s city center to enjoy an evening full of laughter with famous musical comedy duo "Ass-Dur". We expect "Ass-Dur" to delight the audience with a comical performance following this year´s motto: "Laughing - Quite an act sometimes", a continuation of our previous motto "CML - Quite an act sometimes". We all know those moments when reality finally catches up with us and when it seems difficult if not impossible to laugh heartily, but we also know that there is always a silver lining, and "Ass-Dur" will for sure put our stomach muscles to test. So far about 120 patients and relatives from all over Germany and Austria have registered for the event! Last but not least, we plan to strongly promote CML TODAY, the new CML Adherence App developed by the CML Advocates Network to improve adherence in CML patients. The mobile application will be available in German language. 
  • Logo Thai CML Patient Group newThailand: Thai CML Patient Group (Thai CML PAG) plans to get together in the park and do a Walking Campaign.
  • spain aspher logoSpain: The Spanish Association ASPHER (Asociación De Pacientes de Enfermedades Hematológicas raras de Aragón) in close collaboration with varios organizations and institutions will organize a day with specialist from Spain and Italy speaking about CML and some conversation about how to live with CML today with several patients. Also there is a group of nurses very interested to particitate. The association has joined the global campaign "Today, Together" and made use of the campaign´s motto, logo and pictures in their print material (poster and leaflet).
  • HK AdultBloodCancerGroup logoHong Kong: As 22 Sep is Tuesday this year, the Hong Kong Adult Blood Cancer Group has finally choosen the date 19 Sep Saturday as event day and hopefully more members will join. On 19 Sep, we plan our event in 2 parts: Part I - Health talk in morning (that’s the content in the leaflet) including: Doing laughter yoga together, Doctor talk – “smile in seeing CML”, Doctor talk – “generic drugs and STIM”, Patients sharing – the road from CML group setup in last 14 years; Part II – Enjoy a happy lunch “today”, with CML patients, carers, doctors, sponsors, volunteers and friends “together” through sharing and support as a group. Please also don´t miss the leaflet developed by the HK Adult Blood Cancer Group for World CML Day 2015!
  • isun china logoChina: As a celebration of the World CML Day the New Sunshine Charity Foundation will hold a national-wide CML conference on Sep. 20 in Beijing, including sharing of patient advocates organizations, lectures on updates of treatment for CML, a forum on medical insurance policy and sharing of best practices from patients around China.
  • AMAL-MoroccoMorocco: For World CML Day 2015 scheduled for September 22, 2015, AMAL plans to hold the first CML Patient Summit in Casablanca, Morocco. The summit will be an opportunity for CML patients, parents and families to discuss relevant issues concerning the disease, its definition, available treatments, side effects, adherence, resistance and disease monitoring. Also, don´t miss the poster developed by AMAL for World CML Day 2015 in the framework of the global "Today, Together"-campaign (target group: public)!
  • Russia: CMLStopTraditionally in the course of World CML Day we, CML Stop, are telling about the events dedicated to this day. For this purpose we are planning to translate and adapt the CML Advocates Network press release and post it on our forum http://cml-stop.ru and in our facebook group https://www.facebook.com/cmlstop.We are planning to interview leading Russian hematologists about news on CML treatment in Russia, interview leading pharma engineers on perspective medicines. All these materials would be posted on our website and web resources of our partners and friends. We will also discuss World CML Day and our own CML treatment experience on our web forum http://cml-stop.ru/viewforum.php?id=44 
  • diagnoza leukemie 02Czech Republic: World CML Day Partnering is the idea behind launching a CML patient group activity within  the Greek „KEFI“ cancer patient organisation, with the tutorship of the Czech „Diagnoza leukemie“ patient organisation. A patient meeting with lectures by CML specialists,  organized by KEFI on the 22nd September in Athens, will also host a patient speaker, Jana Pelouchova, representing the Czech patient organisation Diagnoza leukemie and CML Advocates Network.
  • LyLe logoDenmark: in Denmark we do not celebrate but mark World CML Day by hosting a national seminar about CML and treatment of CML-patients as well as highlighting the importance of care giver´s involvement. This will take place in Copenhagen on the 22nd of September between 10 AM and 5 PM. Afterwards we will publish a CML magazine carrying the title "LyLe - CML Focus" with patient stories, relevant updates on drugs and treatment. This will be supported by videos on websites and social media to encourage patients as well as care givers to be aware of specific needs. This campaign is not limited to any date or any month, as we speak up patient voices throughout the year - the general public knows so little about the complexity of CML, and the struggle patients meet in their everyday life. All our campaigns and efforts is coordinated with leading Danish hematologists. UNITED WE STAND - please do contribute to awareness of CML and SHOUT IT OUT LOUD.
  • TBM LogoSTRIKEPhilippines: Touched By Max Inc. Philippines will have 3 major events in celebration of World CML Day 2015: 1.) Strike CML! A bowling mini-tournament will be held for patients and caregivers at a popular mall in Manila on 9/20. The objective is to raise awareness in a fun way! It is a Sunday, and the bowling center will fill-up with weekend players. TBM will let the patients vent their anger about their disease on the bowling pins. Strike CML! Prizes await those who can achieved a Strike and also those who can leave the number 9 & 2 pins standing! 2.) On 9/22 TBM will be have a formal turn-over ceremony with the Philippine General Hospital for the donated GenExpert PCR machine. It was a 3 years, back-breaking effort between The Max Foundation, Novartis and TBM to finally put in place only the 3rd PCR machine in the country. TBM patients can soon avail substantially reduced costs for their PCR monitoring. 3.) Also on 9/22, TBM in partnership with The Max Foundation (PCR Campaign) and CML Advocates Network would be going to various partners to put-up the World CML Day Poster. Cakes with logos of Max’s PCR Campaign and the World CML Day would also be given to selected physician’s clinics and other TBM partners.
  • Ecuador: The Asociación Ecuatoriana de Ayuda a Pacientes con Cáncer "Esperanza y Vida" (Ecuadorian Cancer Patient Association “Esperanza y Vida”), is planning to host an informational and recreational meeting, where two activities will take place: 1.) A presentation by a physician who will talk about news and updates in CML treatment, after which there will be a Q&A session for patients to ask questions about their diagnosis (CML). 2.) A recreational outdoors activity, where patients and caregivers will be able to hand out informational brochures and speak to the community about their experience with the CML diagnosis.
  • logo día mundial LMCLogo Esperanza Viva ColombiaColombia: The Fundación Esperanza Viva will share the lectures from the experts of CML ADVOCATES NETWORK with the hematologists and hemato-oncologists in the country. We will do the LMC 9/22 World Day campaign on social networks and on the website to provide a better sight and to promote awareness in the community on a rare type of cancer that only affects 2 people out of 100,000. There will be a press conference to raise interest on CML and the importance of treatments with quality, opportunity and efficiency. We will send a letter to the Minister of Health with a summary of the results of the work done in Latin America on  communal Farmacovigilance on ITK for LMC. We want to give evidence on the importance of a strict farmacovigilance on sold medicines in this country. And finally, we will do educational activities with patients and carers on LMC improvements.
  • israelicmllogoIsrael: The Israeli CML patients support and info organization has launched a big social media campaign on the main internet news site in Israel called YNET. We expect more than 2,000,000 views of our 22/9 video followed with a link to our website and learning and understanding more about CML and blood cancers. We will also have quite many patients interviewed on media local and national. Besides that, we are publishing on our website and on a leading blogger site stories of 7 blood cancer patients as a symbol to the fact that blood cancers represent 7 % of all cancers. Furthermore, one of our CML young woman patient and her new husband will participate on a leading TV program in Israel, raising the issue of pregnancy and CML. Finally, we are working on new videos of experts on variety topics in blood cancers including CML. These will be short 3 minutes videos summarizing the updated news and development in each field.

  • Friends-of-Max-LogoIndia: The Max Foundation and Friends of Max in India have printed a hundred posters to be given to our partners and stakeholders in our journey of the past decade and a half with CML. During the week beginning 22nd September we are organising meetings across the length and breadth of India; in Delhi, Chandigarh, Kochi and Hyderabad where hundreds of CML survivors will gather and "Treat their physicians" to these posters celebrating their survivorship and cakes bearing the message of the importance of posing the question "What Is My PCR?". The group has joined the global campaign "Today, Together" and designed numerous posters for most target groups.
  • WCMLD15 CMLNetworkCanadaCanada: This World CML Day, say Thanks! The Canadian CML Network is launching a campaign of Thanks on World CML Day! Visit cmlnetwork.ca/worldcmlday to send/share/post a free Thank You card recognizing those who have made a difference in your CML journey. Caregivers can also choose a card that shows their support and admiration. So this World CML Day, share a card and raise awareness of CML!
  • Logo Can Survive EgyptEgypt: Can Survive illuminated the pyramids of Kairo with orange during their celebration of World CML Day. See their YouTube video here!
  • logo-ElternvereinGermany: On World CML Day, the German Elternverein für Kinder mit CML (parents´ organization for childern with CML) asks for your donation for children with CML all over the world. We ask you for your time: give us 9:22 minutes of your time to tell your friends about children with CML. Via social media like Facebook, Whatsapp, e-mail, or phone. Why 9:22 minutes? Because 9/22 marks the breaking point in the chromosomes that causes CML. And because 9/22 is the date we try to draw attention to this ultra rare type of leukemia in children.  9:22 minutes of your time. A donation. Today, Together! With your donation we will support: Luz de Vida (Mexico), Friends of Max (India) and other organizations that care for children with CML. Here is the PayPal-link. Thanks for your suppor! 
  • Banner AIL ItalyItaly: The Italian association AIL (Associazione Italiana contro le Leucemie-Linfomi e Mieloma ONLUS, www.ail.it) will hold a webinar on the subject of adverse disease in CML treatment. It will be an online meeting with lecturers by CML specialists, a speaker from AIL CML Patients group and, more importantly, a Q&A session for patients and caregivers. Please join us today at 6PM (GMT+1) by creating your account at this link https://engage.vevent.com/rt/ail_onlus~20150922
  • sodeystvie-logoRussia: The Russian Society of OncoHematology "Sodeystvie" (RSOH "Sodeystvie") is organizing a series of charitable events, arranged on September 14th, 2015, dedicated to World Lymphoma Day (15/09) and World CML Day (22/09): 1.) The All-Russian School for patients with blood cancer as well as their relatives, friends, and everyone. 2.) Blood donation campaign attracting volunteers - donors, aimed to collect blood for severe patients undergoing treatment in the "Almazov Center of Heart, Blood and Endocrinology". 3.) Installation of the "Bench of Life" as a gift for "Almazov Center of Heart, Blood and Endocrinology" from RSOH "Sodeystvie" and "Guild of Blacksmiths" made September 13, 2015 as a part of the "Forge of happiness" festival. 4.) Opening of the photo exhibition "The Strength! The Action! The Life!" on the basis of nationwide photography contest "The Power of Life", organized by RSOH "Sodeystvie" among patients with hematologic blood diseases.
  • Greece: A CML awareness, hope and courage event was organized in Athens, Greece by the group K.E.F.I. (Association of Cancer Patients, Friends and Doctors) for Greek CML patients, K.E.F.I.  members  and volunteers and to announce the launch of a CML patient group within the organization. The event took place from 5 to 8 pm in a concert hall upstairs of a large Athens bookshop withe around 100 participants, patients, relatives and supporters of the KEFI initiative to get CML support group running. ECPC was represented by Vice President, Kathi Apostolidis and Secretary, Jana Pelouchova. Kathi Apostolidis addressed the participants on the role of cancer patient organizations as a source of information and support, of cancer and health policy advocacy, of education in treatments and research. Jana Pelouchova spoke both as a CML patient and advocate stressing the importance of patient education in their disease, the need to follow the treatment prescribed by the patient’s doctor and the importance to make the necessary regular tests at certified laboratories in hospitals treating CML and to get informed about clinical trials for their specific disease. Prof. Ger. Pangalis spoke about the history of CML, how it was discovered and how with the help of new treatments it is currently a treatable disease and patients may go to remission without treatment in comparison to earlier years when it was a deadly disease. The event closed with patients, among them doctors who are CML patients, sharing their journey in CML and stressing the need for starting quickly a CML patient group.
  • Macedonia: The Association for protection of people suffering from CML in the Republic of Macedonia marked the International day of CML 22/9 along with all international associations in the world. Our marking was held in the very center of the city, in the pedestrian zone, in front of the monument of Mother Teresa, where we distributed flyers and T-shirts. We used the motto of this year's marking of CML Today, Together to emphasise the lack of second line therapy for the people suffering from CML in the Republic of Macedonia. At 11a.m. we had a press conference, and our booth, besides our fellow citizens, was also visited by the mayor of our Municipality. During the day, on the occasion of the marking of the International CML day, there were several special broadcasts on TV, i.e., in the prime-time on the news were given wider explanations of how the patients of CML in Macedonia do not have medicines of second-line therapy on the Positive list.

  • Azerbaijan: On World CML Day on September 22 a press conference with participation of doctors, non-governmental organizations, patients and media was held. Information on this day was shown on television. In the evening of the same day the flashmob with participation of volunteers of the organization was held.
  • Romania: for World CML Day 2015 "ARCrare - Romanian Association for Rare Cancers" organized the following campaign activities: 1.) Today, Together - Information activities on World CML Day 2015 (distribution of materials in hospitals, shops, schools and street campaign); 2.) Press conference called Today, Together at Hotel Ambassador in Bucharest. All stakeholders (patients, politicians, national authorities, specialists, journalists and industry) were invited. 3.) Presentation of the video spot "Adriana exists" followed by an interview with Adriana (the real patient). 4.) The press conference was followed by a workshop "Alive library" where we had "books" (mainly patients but also 2 professionals and 1 representative of the Ministry of Health ) that were borrowed by "readers" and then, we had the summary of each book and the feeling expressed both by "readers" and the "books". It was a very attractive format for our workshop and the journalists were very much involved. The press coverage was very good for World CML Day 2015 in Romania. 
  • Malaysia: Max Family Society Malaysia together with The Max Foundation Malaysia is running a media campaign, with the aim to raise awareness on CML among the public. We are focusing on three main messages this year: CML is not infectious, CML is not hereditary and CML is not humiliating. Interviews with physicians and patients are published in local main newspapers, in between the period of 17 Sept - 25 Oct. To allow interaction between patients and public, "Walk for CML" will be taken place on 25 Oct. This event is also being publicized in newspapers, social media and through major hospitals in Kuala Lumpur. The patient group also organized a "Treat Our Physician" session by bringing CML Day Cake with decoration of What is My PCR? branding to stress on importance of monitoring; as well as present copy of World CML Day 2015 poster to physicians group.
  • Logotipo AsopaleuGuatemala: For Saturday Sept 19, ASOPALEU organized an event at Conquistador Hotel & Conference Center in Guatemala City. Besides interesting presentations by renowned experts, interesting workshops were offered: a dance therapy workshop and a workshop on "Healing Wounds" held by a Business Motivator. The impact of these activities have had very positive, mainly in the medical community, increasingly convinced which that an educated patient is a healthier patient. The information provided in the talks was a clear and easy to understand language by patients, who repeatedly thanked the doctors and by the time devoted to education and emotional support to patients.

 

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