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DTSTART;TZID=Europe/Vienna:20240422T170000
DTEND;TZID=Europe/Vienna:20240422T183000
DTSTAMP:20260421T203206
CREATED:20240411T113308Z
LAST-MODIFIED:20240422T124516Z
UID:5837-1713805200-1713810600@ccieurope.eu
SUMMARY:Know the Basics: How can I level up my patient advocacy?
DESCRIPTION:In this webinar\, the participants will learn about existing patient advocate trainings\, how they were developed\, how they were conducted and what they entail. \nWe will present ongoing and upcoming training opportunities for patient advocates hosted by organisations such as WECAN\, EUPATI\, KickCancer\, EURORDIS and CCI! \nParticipants are invited to use the Q&A session to present efforts from their countries or organisations. \n\nAbout the Speakers: \nLaia Bisbal Arnal\nLaia is the Open Classroom Coordinator of The European Patients’ Academy (EUPATI). EUPATI is a public-private and multi-stakeholder partnership that provides education and training to increase the capacity and capability of patients and patient representatives to understand and meaningfully contribute to medicines research and development (R&D). Laia has been working at EUPATI since 2022 in the coordination and development of the EUPATI Open Classroom\, the online training platform. She is also part of the Training Committee of the Patient Expert Training Programme\, a training programme that covers the entire life cycle of medicines R&D. Laia has a degree in Economics and a master’s degree in international cooperation\, human rights\, and social inclusion. Her professional background includes training design and facilitation\, consulting\, and project coordination in partnership with governmental and non-profit organizations.  \n\nRachel Butcher\nRachel rejoined EURORDIS in September 2022 as the Training Manager for the Open Academy programme\, which empowers patient advocates with knowledge and skills to take part in patient engagement roles side-by-side with all stakeholders and to advocate for rare diseases on a European and national level. She is responsible for the end-to-end organisation of training activities\, ensuring high-quality organisation and delivery of the various programmes proposed by the Open Academy. She has previously worked with EURORDIS in both the Events team\, mainly helping to organise ECRD 2018\, as well as with the Open Academy team as an assistant. Prior to rejoining EURORDIS as the Open Academy Training Manager\, she coordinated grassroot organisations helping refugees in Northern France. Rachel has an undergraduate degree in French and Psychology from Newcastle University in the UK and completed a Master in European Studies\, studying at King’s College London and Sciences Po Paris. She speaks English and French (and is learning Spanish!).  \nSara Dederichs\nSara draws from over 25 years of rich experience in leading\, training as well as mentoring diverse and multicultural teams towards defined joint goals. With a background in social psychology and new leadership methodologies\, Sara brings a unique perspective to her role as coordinator of the EPAI team and navigator of the EPAI project portfolio. Beyond her project management responsibilities\, Sara serves as the driving force behind the WECAN Secretariat and is a member of the WECAN Coordination team. She leverages her expertise in leadership and understanding of team dynamics to ensure the optimal use of team resources and foster collaboration\, leading to innovation and succesfull team outcomes. Sara is based in Germany\, was raised in Spain and is fluent in German\, English\, Spanish and has a basic level of understanding Catalan\, Portuguese and Italian. She has two adolescent daughters. \n\nAlice Gerbaux\nAlice has a diploma in economics. She started her career in sales for BIC and Nestlé and later became in charge of marketing and communication for a NGO active in the field of sustainable forests. In her day-to-day life at  KickCancer Alice is in charge of the defence of young patients with cancer\, and more specifically so by supervising a training that will help them become expert patient and by coordinating their participation in international and KickCancer’s internal projects. The final aim of Alice’s role at KickCancer is to ensure that research and the legal framework meet the needs of sick children and lead to more efficacious and less toxic treatments. \n\nRaluca Popa\nRaluca is the Global Programme Manager\, joining Childhood Cancer International at the beginning of this year. Prior to this\, Raluca was in charge of the programme coordination of the emergency response for Ukraine on behalf of the World Organisation of the Scout Movement. She has experience in coordinating international volunteering projects and capacity building programmes for NGOs. With a strong interest for education and lifelong learning\, she is a certified trainer focused on experiential learning and human rights. Raluca is a passionate person with a special heart for children.  \nregister here
URL:https://ccieurope.eu/event/know-the-basics-how-can-i-level-up-my-patient-advocacy/
LOCATION:Online Webinar
CATEGORIES:Event,Gold Webinars
ATTACH;FMTTYPE=image/png:https://ccieurope.eu/wp-content/uploads/2024/04/Gold_webinar_cci_europe_patient_advocacy_banner.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Vienna:20240205T170000
DTEND;TZID=Europe/Vienna:20240205T183000
DTSTAMP:20260421T203206
CREATED:20240123T152214Z
LAST-MODIFIED:20240123T152517Z
UID:5357-1707152400-1707157800@ccieurope.eu
SUMMARY:Know the basics: ICCD Campaign 2024 - Kick Off!
DESCRIPTION:In this webinar\, CCI Europe will present to the participants the upcoming 3-years global ICCD Campaign “Equal Access To Care” and will focus on how member organisations can actively contribute to year 1 of the campaign with the motto: “Unveiling Challenges”. \nThe Campaign Toolkit will be presented so that member organisations can share and promote the campaign in their countries. In year 1\, everyone affected by childhood cancer is invited to go to the ICCD-platform and submit a digital postcard with the challenges and inequalities they face in their country related to childhood cancer. The postcard will then show up on an interactive\, virtual world map. The objective for year 1 is to raise awareness about the global challenges and inequalities. \nThe aim of this Gold Webinar is to mobilize CCI Europe member organisations for broad and active participation in the campaign. \n\n\nAbout the Speakers: \n\nAnne Goeres\nAnne is managing director at the Fondatioun Kriibskrank Kanner\, national foundation for children with cancer in Luxembourg for 15 years and Committee member of CCI Europe. Anne holds a master’s degree in communications\, more specifically in political and financial communications\, as is therefore the lead of CCI Europe’s Communication Pillar. Anne is a founding board member of Don en Confiance Luxembourg (transparency donations)\, of Ile aux clowns (hospital clowns) and of the National Cancer Institute in Luxembourg representing young cancer patients. Together with two other organisations\, she created Fight Kids Cancer\, an innovative annual call for paediatric cancer research projects. \n\nCarina Schneider\nCarina was diagnosed with Ewing’s Sarcoma at the age of 17 and she’s today a passionate patient advocate\, . Experiencing the lack of adequate long-term follow-up care\, she became active in patient advocacy in 2009. In 2017\, she was part of the group of survivor-representatives from across Europe who launched the survivors-network within CCI Europe. Later that year\, she joined the CCI Europe Committee.\nCarina is a psychology graduate and has worked in paediatric oncology since 2013\, first in the Austrian Childhood Cancer Organisation as project manager and later at the Medical University of Vienna as research coordinator in the psychosocial team of the Paediatric Neurooncology Department. In January 2022\, she became CCI Europe’s Managing Director and works\, together with a committed team\, dedicated Committee Members and patient advocates from all over Europe for a better future for children\, adolescents and young adults\, as well as their families\, who are affected by cancer. \n\nregister here
URL:https://ccieurope.eu/event/know-the-basics-iccd-campaign-kick-off/
LOCATION:Online Webinar
CATEGORIES:Event,Gold Webinars
ATTACH;FMTTYPE=image/jpeg:https://ccieurope.eu/wp-content/uploads/2024/01/goldWebinarICCD2024.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Vienna:20231113T170000
DTEND;TZID=Europe/Vienna:20231113T183000
DTSTAMP:20260421T203206
CREATED:20230925T114717Z
LAST-MODIFIED:20230925T144917Z
UID:4803-1699894800-1699900200@ccieurope.eu
SUMMARY:Know the basics: How does policy work at the European level?
DESCRIPTION:In this webinar\, the participants will learn about the role of the different EU institutions\, and how policymaking works on the EU level. It will also address how patient organisations can effectively advocate and interact with MEPs in favour of their cause. \nThe webinar will be delivered by Teresa Pais and Marine Gouders. \n\n  \n\nAbout the Speakers:  \n\nTeresa Pais \nTeresa Pais is an EU public affairs specialist; she worked as parliamentary assistant to a member of the European Parliament\, in a trade association and consultancies in the healthcare sector. She graduated in Law and has a Master’s degree in European affairs.  \n\nMarine Gouders \nMarine Gouders\, member of the CCI Europe Office\, studied law and specialised in European law. After graduating\, she did an internship at the European Parliament\, where she discovered the workings of the European institutions. For the past year\, she has been working in the European Affairs Pillar.\n\nregister here
URL:https://ccieurope.eu/event/know-the-basics-know-the-basics-how-does-policy-work-at-the-european-level/
LOCATION:Online Webinar
CATEGORIES:Event,Gold Webinars
ATTACH;FMTTYPE=image/jpeg:https://ccieurope.eu/wp-content/uploads/2023/09/goldWeb1311.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Vienna:20230828T170000
DTEND;TZID=Europe/Vienna:20230828T183000
DTSTAMP:20260421T203206
CREATED:20230418T142258Z
LAST-MODIFIED:20240220T183215Z
UID:4455-1693242000-1693247400@ccieurope.eu
SUMMARY:Know the basics: What are the Models of Care in Paediatric Oncology?
DESCRIPTION:The aim of shared care is to cure every child with cancer\, with optimal quality of life. \nThe principle of shared care is close cooperation between a central paediatric oncology expertise centre and local shared care centres\, so that the young patient can avoid long distance travels for standard clinical examinations and treatments. it is important that the shared care centres meet certain quality criteria and connect closely with the central expertise centre\, so that the best possible care for the child is guaranteed. \nIn this Gold Webinar on the 28th August at 5pm CET\, we will present various shared care models in Europe\, critically examine whether they deliver what they promise and whether they can serve as best practice models for other countries. \n  \nregister here
URL:https://ccieurope.eu/event/what-are-the-models-of-care-in-paediatric-oncology/
LOCATION:Online Webinar
CATEGORIES:Event,Gold Webinars
ATTACH;FMTTYPE=image/jpeg:https://ccieurope.eu/wp-content/uploads/2023/04/Screenshot-2024-02-20-174634.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Vienna:20230703T170000
DTEND;TZID=Europe/Vienna:20230703T183000
DTSTAMP:20260421T203206
CREATED:20230418T141328Z
LAST-MODIFIED:20240220T171332Z
UID:4448-1688403600-1688409000@ccieurope.eu
SUMMARY:Know the basics: What are essential medicines?
DESCRIPTION:In this webinar\, the participants will learn about essential medicines\, what they are\, why they are important and which challenges Paediatric Oncology faces in this regard. Moreover\, it will address the outcomes of the Essential Medicines Project. \n  \nregister here
URL:https://ccieurope.eu/event/know-the-basics-what-are-essential-medicines/
LOCATION:Online Webinar
CATEGORIES:Event,Gold Webinars
ATTACH;FMTTYPE=image/jpeg:https://ccieurope.eu/wp-content/uploads/2023/04/Screenshot-2024-02-20-174655.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Vienna:20230515T170000
DTEND;TZID=Europe/Vienna:20230515T183000
DTSTAMP:20260421T203206
CREATED:20230331T085959Z
LAST-MODIFIED:20230331T130035Z
UID:4369-1684170000-1684175400@ccieurope.eu
SUMMARY:Advance your knowledge: What are ESCPs?
DESCRIPTION:In this webinar\, participants will learn what an ESCP is\, which ESCP currently exist\, why they where developed and how they should be used. Moreover\, the webinar will highlight the importance of using standardized treatment protocols\, and of sharing expertise and resources between countries. Also\, ways will be addressed on how patient organisations can effectively lobby for the implementation of ESCPs in their countries. \n  \nregister here
URL:https://ccieurope.eu/event/gold-webinar-advance-your-knowledge-what-are-escps/
LOCATION:Online Webinar
CATEGORIES:Event,Gold Webinars
ATTACH;FMTTYPE=image/png:https://ccieurope.eu/wp-content/uploads/2023/03/Screenshot-2023-03-31-at-15.00.13.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Vienna:20230403T170000
DTEND;TZID=Europe/Vienna:20230403T183000
DTSTAMP:20260421T203206
CREATED:20230120T140921Z
LAST-MODIFIED:20230403T121416Z
UID:4169-1680541200-1680546600@ccieurope.eu
SUMMARY:Know the basics: What is ERN PaedCan?
DESCRIPTION:In this webinar\, participants will learn why ERNs exist\, what ERN PaedCan is\, how it operates\, whom it should serve and which cases are eligible. It will explain the CPMS and how it works. Furthermore\, it will explain how patient organisations can in touch with the ERN PaedCan and be the link between ERN and patients/families and support implementation on the national levels.\n \n\n\n\n\n\n \n\n\nAbout the Speakers: \nAnne Goeres \nAnne is managing director at the Fondatioun Kriibskrank Kanner\, national foundation for children with cancer in Luxembourg for 15 years and Committee member of CCI Europe. Anne holds a master’s degree in communications\, more specifically in political and financial communications\, as is therefore the lead of CCI Europe’s Communication Pillar. Anne is a founding board member of Don en Confiance Luxembourg (transparency donations)\, of Ile aux clowns (hospital clowns) and of the National Cancer Institute in Luxembourg representing young cancer patients. Together with two other organisations\, she created Fight Kids Cancer\, an innovative annual call for paediatric cancer research projects.  \n \n \nProf. Ruth Ladenstein\, MD\, MBA\, cPM  \nRuth Ladenstein is Professor in Paediatrics and Senior Consultant for Paediatric Haematology and Oncology at the St. Anna Children´s Hospital . She is Head of the Clinical Trials Unit S2IRP (Studies & Statistics for Integrated Research and Projects) at the Children’s Cancer Research Institute (CCRI) of the St. Kinderkrebsforschung GmbH (http://science.ccri.at/).  \nMartin Schalling  \nMartin Schalling is a project manager in the Research Management Office of the Children’s Cancer Research Institute (CCRI). He studied Pharmaceutical and Medical Biotechnology and worked as a Researcher at the Medical University of Vienna. He is mainly responsible for the Clinical Patient Management System CPMS. \n\nregister here
URL:https://ccieurope.eu/event/know-the-basics-what-is-ern-paedcan/
LOCATION:Online Webinar
CATEGORIES:Event,Gold Webinars
ATTACH;FMTTYPE=image/png:https://ccieurope.eu/wp-content/uploads/2023/03/Screenshot-2023-03-06-at-17.53.16.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Vienna:20230306T170000
DTEND;TZID=Europe/Vienna:20230306T183000
DTSTAMP:20260421T203206
CREATED:20230116T145714Z
LAST-MODIFIED:20230227T110334Z
UID:4054-1678122000-1678127400@ccieurope.eu
SUMMARY:Know the basics: What is Cross Border Health Care?
DESCRIPTION:In this webinar\, participants will learn what cross border health care means\, why it is important and necessary in the context of Paediatric Oncology and highlight challenges. Moreover\, it will address existing inequalities in access to diagnosis\, treatment and care across Europe. It will give an outlook on the follow-up webinar about ERN PaedCan. \n\n\n\n\n\n\n\n\n\n\n\n \nAbout the Speakers: \nAnne Goeres \n\nAnne is managing director at the Fondatioun Kriibskrank Kanner\, national foundation for children with cancer in Luxembourg for 15 years and Committee member of CCI Europe. Anne holds a master’s degree in communications\, more specifically in political and financial communications\, as is therefore the lead of CCI Europe’s Communication Pillar. Anne is a founding board member of Don en Confiance Luxembourg (transparency donations)\, of Ile aux clowns (hospital clowns) and of the National Cancer Institute in Luxembourg representing young cancer patients. Together with two other organisations\, she created Fight Kids Cancer\, an innovative annual call for paediatric cancer research projects.  \n\n \nHarun Sabic \nHarun is a survivor who had osteosarcoma when he was 15. He has finished law school and is currently working in the Association “Heart for kids with cancer” in Bosnia and Herzegovina. Harun is a member of CCI Europe’s Committee and an active participant in the Survivorship and Diagnosis\, Treatment & Care Pillars.  \n \n \nMarko Ocokoljić \nMarko is a pharmacist with gained experience in healthcare research\, specifically the oncology. He is knowledgeable in health policy\, which scopes research briefings on childhood cancer\, producing high-level oncopolicy briefings\, monitoring of scientific research and key paediatric oncology policy developments at the EU level\, and engaging with external entities. \n \n\n\n\nMake sure to register on the button and you will automatically be sent a link to join the webinar!register here
URL:https://ccieurope.eu/event/know-the-basics-what-is-cross-border-health-care/
LOCATION:Online Webinar
CATEGORIES:Event,Gold Webinars
ATTACH;FMTTYPE=image/png:https://ccieurope.eu/wp-content/uploads/2023/01/Screenshot-2023-02-22-at-14.34.53.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Vienna:20221212T170000
DTEND;TZID=Europe/Vienna:20221212T180000
DTSTAMP:20260421T203206
CREATED:20230221T164528Z
LAST-MODIFIED:20230222T131335Z
UID:4266-1670864400-1670868000@ccieurope.eu
SUMMARY:Advance your Knowldege: Understanding the EU Paediatric and Orphan Regulations
DESCRIPTION:The CCI Europe European Affairs Pillar Committee has hosted this educational webinar to help the European childhood cancer community in better understanding the EU Paediatric and Orphan Regulations – indeed\, this is what children with cancer need to get access to better care! \nThe EU Paediatric and Orphan Regulations are about to be reviewed by the European Parliament. This Education Policy Webinar explained the loopholes of those two regulations that have the potential to improve a timely access to innovative\, high-quality and safe medicines for young cancer patients. It also highlighted the proposed measures put forward by the members of the European Pillar to ensure more efficient and kinder treatments for them. \nThe presentation was followed by an interactive Q&A session with the members of the audience. \nSpeakers: Delphine Heenen\, CCI Europe Committee Member & Lead of European Affairs Pillar and Dr. Teresa de Rojas\, MD-PhD\, ACCELERATE Scientific Coordinator
URL:https://ccieurope.eu/event/advance-your-knowldege-understanding-the-eu-paediatric-and-orphan-regulations/
LOCATION:Online Webinar
CATEGORIES:Event,Gold Webinars
ATTACH;FMTTYPE=image/png:https://ccieurope.eu/wp-content/uploads/2023/02/delphine-webinar.png
END:VEVENT
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