Shajjad Rizvi, Author at Youth Cancer Europe (YCE)

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“It’s hard enough to beat cancer, but just because you’re in remission doesn’t mean your life is a cakewalk. There’s a level of anxiety that comes with surviving the disease that never really goes away. You’ve got to watch your diet and your health habits.You’re always on alert. Those powerful people deserve a break, especially the young survivors that still have their whole lives ahead of them.” – Kat Bein, Billboard Magazine

At this year’s fourth edition of Untold, Romania’s largest electronic music festival, some of the world’s biggest DJs including Armin Van Buuren, Afrojack, Kygo and Danny Avila greeted young cancer survivors from five different countries in meetings organised by Youth Cancer Europe, who specially flew the youngsters in for the occasion.

Our story attracted the attention of the world’s press, with an extensive article published in the homepage of none other than Billboard, the biggest music news website on the planet!

Check out the links below for some of the highlights:

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During last weekend’s fourth edition of Untold, Romania’s largest electronic music festival, some of the world’s biggest DJs including Armin van Buuren, Afrojack, Kygo and Danny Avila greeted youth cancer survivors from five different countries in meetings organised by Youth Cancer Europe, who specially flew the young adults in for the occasion.

A group of survivors from around the continent, aged 18-26, were given the opportunity through a social media competition organized by the charity for its network of cancer survivors, which included representation from Spain, Northern Ireland, Poland, Macedonia, and Romania. Afrojack was the first to meet the group backstage during Thursday night, while Armin Van Buuren took photos with the survivors before taking to the stage at Cluj Arena for a mammoth 7-hour headline set that wrapped up the festival. Spanish DJ Danny Avila also wore the “F*** Cancer” bracelet given to him by the group during his Saturday night set, taking to Instagram to share a photo and recall the meeting as “unbelievable”.

youth cancer survivors kygo

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youth cancer survivors armin van buuren

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Previous meet-and-greets organised by Youth Cancer Europe for its network of survivors include Martin Garrix, Hardwell and Dimitri Vegas & Like Mike.

Katie Rizvi, CEO, and Founder of the Youth Cancer Europe Foundation said: “Once again, we were lucky to secure the opportunity to invite youth cancer survivors from across the continent to meet some of their heroes at the incredible Untold Festival in Cluj-Napoca, Romania. Afrojack, Kygo, Danny Avila and Armin van Buuren took the time to speak to each of our guests individually, take photos and sign autographs for them. These are memories that they will cherish forever and we’re always over the moon to bring these experiences to them. A huge thank you goes out from us to the DJs, as well as to the team at Untold for all their help in making this happen. Until the next time!”

Youth Cancer Europe would like to thank the UNTOLD festival for providing access to the festival and to Ecolor manufacturing and the Swedish Consulate in Cluj Napoca for sponsoring the travel and accommodation of visiting youth cancer survivors.

[vc_row][vc_column][vc_single_image image=”1302″ img_size=”full” css=”.vc_custom_1539595308210{margin-bottom: 20px !important;}”][vc_column_text]The right to be forgotten provision is an important milestone in European policymaking. However, it is not universally accessible to cancer survivors across Europe nor does it address all their specific issues. Cancer survivors are often disadvantaged for life when applying for essential services such as loans, mortgages or child adoption.

In October, Youth Cancer Europe will be hosting an afternoon event at the European Parliament to discuss access to essential services for all cancer survivors, followed by a networking reception with cancer survivors and a wide range of stakeholders. The event will be hosted by Sirpa Pietikäinen (MEP) and Cristian-Silviu Busoi (MEP), taking place on October 17th (Wednesday) in the European Parliament.

If you would like to join us at the event, please register via the official Eventbrite page here.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1538462523178{margin-top: 30px !important;margin-bottom: 30px !important;}”]

PROGRAMME
Youth Cancer Europe meeting on The right to be Forgotten for Cancer Survivors
17th October 2018
5:00 — 7:00 PM 
European Parliament 
Meeting room: ASP 5D, European Parliamentary Research Service Library
Meeting time for participants needing Parliament access: 3:30 pm, Simone Veil Entrance, European Parliament (map below)

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Networking cocktails and dinner 
7:15 — 9:00 PM
Hotel Radisson RED, Rue d’Idalie 35, 1050 Brussels

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As part of our continued policy work across the continent, Youth Cancer Europe recently participated as co-signatories of WECAN’s position paper on further EU integration of HTA (health technology assessment). The paper, which supports the European Commission’s legislative proposal for a regulation of the European Parliament and of the Council on health technology assessment and amending Directive 2011/24/EU, focuses on efforts to speed up the assessment process for new medicines and equitable access to new therapies, as well as proposing additional considerations for patient-centricity and patient engagement, transparency and accountability.

WECAN is an informal network of leaders of European cancer patient umbrella organisations, of which YCE is a member.

You can read and download the full paper, which was presented on 21 June 2018, on PDF here.

For more information about the WECAN network, please visit their website http://www.wecanadvocate.eu

Policymaking follows a clear and established route called the policy cycle. For you to make an impact, it is therefore important to understand the policy cycle in your country. There are typically many steps before a bill is introduced into parliament. It is here, where you can have a real impact.

The policy cycle starts with issue identification and often this task is performed by civil servants in ministries. At this level, you have the chance to talk to experts directly and have the most influence.

Alternative routes to agenda setting are conferences of political parties. Here, the parties will define their policy proposals for the years to come and you will be in direct contact with high-level policy makers.

Once you have established your issue, it is important to get your issue on the political agenda. Here, you can work with a variety of stakeholders you have identified earlier. These can be members of parliament but might also be other stakeholders that care about your cause.

Having established your issue on the political agenda, it is now also important find a member of parliament to support your issue. This person can then, for example, call you in as an expert to highlight your issue in the respective committee.

All policy proposals will stand or fail with their financing. A policy might be enacted but not financed. Therefore, identify the stakeholder that has spending power and make sure that person is onboard with your proposed solution.

Having passed all these steps, it is now important to follow the implementation of the policy and keep an eye on its implementation. This will make sure the policy is implemented as intended for the benefit of patients.

Countries represented at YCE’s Fundamentals of EU Policy Making included Austria, Belgium, Bulgaria, Czech Republic, Finland, Germany, Hungary, Lithuania, Poland, Portugal, Republic of Moldova, Romania, Serbia, Spain, Sweden and United Kingdom.

A special thank you goes out to our sponsors for helping make the event possible.

In policymaking, it is important to note that high patient association participation does not necessarily equal high impact. There are a variety of tools available that will help you to achieve your desired outcome. These tools vary in their complexity and rigor. They will help evaluate criteria for achieving impact in particular settings. Amongst the most important are leadership, training & experience.

To achieve your goals, it is important to identify strong partners. In particular, this means the RIGHT partners for achieving your goals.

These can be supporters & influencers. Especially those who add credibility. It’s also important to consider potential ‘adversaries’ and think about how to involve them in your strategy. It is also important to think about how many partners are necessary to achieve your goal.

When thinking about building a coalition, you can either start a new coalition or start a collaboration. Ask yourself, whether it is possible to collaborate on a defined issue with existing groups?

Coalitions can be a powerful tool to achieve broader objectives, have greater credibility, and provide wider perspectives than a single person. Once you have found your partners and established your coalition, encouraging more information sharing will help each member to better understand each other’s unique roles. This in turn is helping to achieve better policy outcomes.

When meeting with stakeholders, underscore that patients are the experts in their beliefs, with their own values and preferences. Ensure that the “physical” dimension of care is not the only factor considered when talking to your stakeholders. Patient associations can ensure patient perspectives are integrated into policy-making and healthcare reforms, but also should ensure patient participation in hospital boards, clinical trial ethics committees, healthcare professional training programs or HTA analysis.

Successful partnerships are those that achieve real impact.

Countries represented at YCE’s Fundamentals of EU Policy Making included Austria, Belgium, Bulgaria, Czech Republic, Finland, Germany, Hungary, Lithuania, Poland, Portugal, Republic of Moldova, Romania, Serbia, Spain, Sweden and United Kingdom.

A special thank you goes out to our sponsors for helping make the event possible.

Patients can play an important part in policy making but it is important to come well prepared to a meeting. When defining your ask, make sure it is something your particular stakeholder can change.

Once you have defined your policy asks, it is important to also identify your stakeholders. Keep in mind that the most vocal stakeholder might not be the stakeholder with the most influence.

When developing your ask it is also important to not just be reactive to a policy that is debated in parliament. To be successful with your ask, it is important to meet early and to meet often to make stakeholders aware of the issue you are concerned with.

A stakeholder might agree to meet with you but if there is nothing they can do you will not have achieved your defined objective. When you work on a very specific technical detail of legislation the civil servants in a ministry might be the most appropriate person to work with instead of the minister directly. Also consider broadening your engagement with stakeholders and don’t just focus on healthcare related stakeholders.

For example, if you are asking for more funding for a specific cause it might be worthwhile to speak to the Ministry of Finance instead of the Ministry of Health as they will have the spending power.

When concluding a meeting with a stakeholder, always leave something behind such as a one-page document which summarises the key position you discussed.

Always make sure you follow up with your requests as your stakeholder will have many other meetings.

Countries represented at YCE’s Fundamentals of EU Policy Making included Austria, Belgium, Bulgaria, Czech Republic, Finland, Germany, Hungary, Lithuania, Poland, Portugal, Republic of Moldova, Romania, Serbia, Spain, Sweden and United Kingdom.

A special thank you goes out to our sponsors for helping make the event possible.

We recently had the pleasure to meet Finnish MEP Sirpa Pietikäinen and the Head of Cabinet to the Commissioner for Health and Food Safety Arūnas Vinčiūnas for two of our main sessions as part of our Fundamentals of EU Policymaking week in Brussels, where participants had the chance to learn more about the key steps to successfully lobby for change in cancer treatment and after-care in their own territories.

Katie Rizvi, Co-Founder, YCE:

We have now had a four-day policy deep-dive, here in the heart of the European Union, Brussels, to learn about policymaking and to meet with many key stakeholders.”

Sarunas Narbutas, Co-Founder, Chairman, YCE:

“In order to better understand what we do, we took a 360-degree look into how stakeholders operate. And we didn’t just go there and observed what was happening. We engaged in discussions. We brought up new ideas and we forged new collaborations.”

Sirpa Pietikäinen, MEP, Finland:

“I am very excited about the power and the spirit of what you have. This is a very different kind of patient organisation. Existing patient organisations here in Europe are doing great work, but they are mostly focusing on prevention, medication and treatment of certain diseases. What I understand about your agenda is that it’s much broader, when it includes such things as the future of your finances, employment and many other issues that impact your life as a survivor.”

Jeremy Akhavi, Member, YCE:

“The highlight has been the in-depth look by the experts; you can read about it, you can watch videos on it, but you can’t actually ask questions. You can’t have these in-depth discussions about how everything works. And when you do understand how the inner workings of the European Union all work, that’s when you can finally implement policy changes. And that’s a huge part of what this division of Youth Cancer Europe is all about.”

Bradley Gudger, Member, YCE:

“Youth Cancer Europe have been very generous by putting us in front of the EU Health Commissioner’s team, as well as the different think-tanks. It’s been extraordinary to get to meet all these people and seeing how they listen to us.”

Arūnas Vinčiūnas, EU Commission:

“I think it’s hugely important for all our policy actions, whether legislative or non-legislative, that the voices of patients and all the stakeholders are the first thing we want to hear. They bring the issues to the table which we try to solve by listening to them. We want to listen to the people, to those who are involved in life, who face the problems… and that’s why your organisation is as important as any other.”

Countries represented at YCE’s Fundamentals of EU Policy Making included Austria, Belgium, Bulgaria, Czech Republic, Finland, Germany, Hungary, Lithuania, Poland, Portugal, Republic of Moldova, Romania, Serbia, Spain, Sweden and United Kingdom.

A special thank you goes out to our sponsors for helping make the event possible.

[vc_row][vc_column][vc_single_image image=”1048″ img_size=”full” css=”.vc_custom_1528170891778{margin-bottom: 25px !important;}”][vc_column_text]At the end of May 2018, Youth Cancer Europe successfully wrapped up a 4-day induction week on the Fundamentals of EU Policy Making in Brussels, Belgium. 25 cancer survivors from 16 European countries, all of whom are active members of their own cancer organisations in their respective territories, gathered in the capital of Europe to attend a series of workshops, panel discussions and meetings.

The sessions included visits to the European Commission to meet with Arūnas Vinčiūnas, the Head of Cabinet for Vytenis Andriukaitis (DG SANTE); a meeting with Finnish MEP Sirpa Pietikäinen; a workshop with Alexander Kvitashvili (former Minister of Health for Ukraine and Georgia); as well as discussions with experts in global health policy. Additional highlights included meetings at the offices of Transparency International, the European Patient Forum, the European Federation of Pharmaceutical Industry Associations (EFPIA), the American Chamber of Commerce and the EU office of the Stockholm region, where participants gained first-hand insight into the importance of collaboration between different organisations and the impact that regional offices have when lobbying for EU policy making.

The aim of these meetings was to empower young cancer activists across the continent with the necessary knowledge and tools to effectively lobby for policymaking that directly affects the care and quality of life of young cancer patients and survivors at a local, regional and national level. The conference’s closing meeting also saw the write-up of a white paper that will lead the next steps for Youth Cancer Europe and its member organisations in the fight for better care for youth living with cancer and beyond.

Some of the key issues discussed which concern young cancer patients and survivors around Europe included revisiting the cross border healthcare directive and its implementation, fertility preservation ahead of cancer treatment, discrimination in access to fundamentals such as insurance and mortgages years after finishing treatment and guarantee of income and benefits while undergoing treatment.[/vc_column_text][vc_single_image image=”1049″ img_size=”full” css=”.vc_custom_1528170902434{margin-top: 25px !important;margin-bottom: 25px !important;}”][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]

“Our meetings highlighted the increased interest in youth cancer issues. We specially welcomed the meeting with Arūnas Vinčiūnas and his interest in European Reference Networks and Cross Border Healthcare. We are also proud to increase our campaign for the right to be forgotten so cancer survivors don’t have to suffer discrimination throughout their lives when applying for mortgages or take out life insurance.”
Šarūnas Narbutas, Youth Cancer Europe Chairman and President of the Lithuanian Cancer Patient Coalition (POLA).

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“Youth with cancer represent very specific issues relevant to their age and life experience. The concerns that this very specific age group of patients have are unlike those of the paediatric or the older adult population. It is vital to listen to them, incorporate their views and engage them in all levels of decision-making, as unique contributors to the discussion. We are very happy that this was confirmed today by the Head of Cabinet for Vytenis Andriukaitis.”
Katie Rizvi, co-Founder and Executive Director of YCE

[/vc_column_text][vc_single_image image=”1050″ img_size=”full” css=”.vc_custom_1528170930148{margin-top: 25px !important;margin-bottom: 25px !important;}”][vc_column_text]Countries represented at YCE’s Fundamentals of EU Policy Making included Austria, Belgium, Bulgaria, Czech Republic, Finland, Germany, Hungary, Lithuania, Poland, Portugal, Republic of Moldova, Romania, Serbia, Spain, Sweden and United Kingdom.

A special thank you goes out to our sponsors for helping make the event possible.

 

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On May 20th we’ll be landing in Brussels for a weeklong event on The Fundamentals of EU Policymaking. Participants from 15 countries will partake in intensive workshops that will look at how the European Parliament works, what role do parliamentary committees play, what is the European Commission’s role and how does policymaking happen and why does it matter to us. This will include a workshop with a former minister of health as well as discussions with experts in global health policy.
The workshops will be followed by visits to the European Parliament where participants will meet with a Member of Parliament to gain practical insights. This will be complimented with an opportunity to grab first-hand experience of all levels of policymaking by meeting with a variety of stakeholders from permanent representations, industry associations, chambers of commerce and civil society organisations; the highlight of which will be our meeting with the team of commissioner Vytenis Andriukaitis (DG SANTE).
The Fundamentals of EU Policymaking takes place May 20th-24th in Brussels, Belgium. Follow our social media channels for more information and updates during the week!