KickCancer
La fondation a pour buts désintéressés de soutenir, au niveau belge et international, la recherche scientifique, clinique et fondamentale, dans le domaine des cancers pédiatriques et plus généralement, de favoriser et de développer toutes activités en vue de la guérison des cancers pédiatriques et du suivi médical des traitements, avant et après la guérison.
ID: 768588825862-96
Lobbying Activity
Response to EU’s next long-term budget (MFF) – EU funding for competitiveness
7 Nov 2025
KickCancer, a Belgian foundation financing research in paediatric oncology and a member of CCI Europe, welcomes the opportunity to contribute to this consultation. Europes competitiveness must be underpinned by a healthy and skilled population, and by an innovation ecosystem that addresses areas of unmet medical need. Investment in childhood cancer achieves both: it builds Europes leadership in health innovation while safeguarding the future of its children and workforce. The next MFF must place health innovation at the heart of Europes competitiveness agenda. Paediatric oncology is a high-impact test case: it combines frontier science, advanced technologies and cross-border collaboration. Yet, with only 16 paediatric cancer drugs approved in the past decade compared to over 150 for adults, Europe risks falling behind precisely where it can deliver unique global value. Boosting EU funding for paediatric oncology drug development, digital research infrastructures and AI-driven innovation will reinforce Europes life sciences competitiveness while addressing an area of high social return and limited commercial incentive. EU-funded initiatives such as the EU Cancer Mission, Horizon Europe projects (ITCC-P4, UNICA4EU) and the European Reference Network for Paediatric Cancer (ERN PaedCan) demonstrate that public investment drives competitiveness. These cross-border networks turn fragmented efforts into collective excellence a hallmark of European value added. The next MFF should scale this model by establishing Comprehensive Childhood Cancer Infrastructures within ERN PaedCan to integrate research, care, innovation and training. By investing boldly, Europe can become the global centre of excellence in paediatric oncology and strengthen its leadership in health research. Europes strength lies in its ability to turn data into innovation. Paediatric oncology projects such as UNCAN.eu and UNICA4EU already show how AI and federated data systems can accelerate discovery and personalise treatment. The next MFF should make data-driven health innovation a flagship of EU competitiveness by investing in secure, interoperable infrastructures under the EHDS. By turning digital sovereignty into scientific leadership, Europe can lead the world in responsible, high-impact health innovation. Europes competitiveness depends on aligning public missions with private innovation. In childhood cancer, where market incentives are limited, EU leadership is essential to de-risk research and attract industry participation. Dedicated Horizon Europe calls, innovative financing tools and flexible regulatory frameworks can stimulate SME and biotech engagement. Turning unmet medical need into an innovation opportunity will strengthen Europes life sciences sector while delivering breakthrough treatments to children with cancer. Every child cured from cancer is a citizen who can study, work and contribute to Europes future. More than 500,000 childhood cancer survivors live in Europe today, many with long-term health or psychosocial challenges that limit participation in education and employment. Investing in survivorship research, rehabilitation and healthcare integration is therefore both an economic and moral imperative. Training clinicians, researchers and data scientists through ERN PaedCan and the Cancer Mission Hubs builds the high-end skills that power Europes innovation economy. Empower civil society as a competitiveness asset Patient organisations amplify EU investment by bridging policy, research and citizens. They generate data, shape priorities and translate innovation into tangible impact. Sustained EU4Health operating grants and project-based funding are essential to keep these organisations active within Europes innovation ecosystem. Civil society is not a cost but a catalyst for Europes competitiveness and a driver of long-term social and economic resilience.
Read full responseResponse to EU’s next long-term budget (MFF) – performance of the EU budget
7 Nov 2025
KickCancer, a Belgian foundation financing research in paediatric oncology and a member of Childhood Cancer International Europe (CCI Europe), welcomes the European Commissions efforts to simplify and strengthen the EU budget performance framework. Simplification is necessary, but it must not come at the cost of visibility for high-impact areas that represent the EUs greatest added value. The future framework should measure not only efficiency, but impact on people, on health, and on the resilience of European society. 1. Simplification must not erase health and social impact Reducing the number of performance indicators is understandable, but the new framework must still capture what matters most for citizens: better health outcomes, reduced inequalities, and improved quality of life. Many of the EUs most valuable achievements such as those in rare diseases and childhood cancer are not visible through financial or economic metrics alone. Indicators must therefore include outcomes related to survival, access to care, participation in research, and quality of life for patients and survivors. Streamlining should clarify, not narrow, what the EU measures as success. 2. Measure European added value, not just efficiency The true performance of the EU budget lies in what can only be achieved collectively at European level. In areas such as childhood cancer, no single Member State can ensure equal access to care or research innovation on its own. EU programmes like Horizon Europe, EU4Health and Europes Beating Cancer Plan have proven that cross-border collaboration saves lives, accelerates discovery and strengthens Europes research and innovation base. The new performance framework must recognise this European added value through indicators that measure cooperation, research leverage, and capacity building across borders not just national outputs. 3. Simplification should strengthen, not weaken, accountability A single, consistent performance framework can reduce administrative burden and improve transparency, but it must be co-designed with those delivering and benefiting from EU programmes including health stakeholders, research organisations and civil society. Indicators that are too generic risk disconnecting reporting from real-world results. Involving these actors in developing a common set of indicators will help ensure that accountability remains meaningful, measurable and relevant to citizens. Simplified reporting must still capture complex societal goals such as innovation, equity and long-term health resilience. 4. Transparency and access to information empower citizens Access to clear, comparable performance data is essential for public trust and democratic accountability. Civil-society actors, including patient and survivor organisations, can play a constructive role in analysing, communicating and improving the EUs performance results. The new framework should therefore guarantee that data on EU-funded health and research outcomes is transparent, accessible and understandable. Reporting on indicators related to health impact, equality and cross-border collaboration will make the EU budget more visible, relevant and trusted. In conclusion, KickCancer supports a simplified and coherent performance framework, but performance must mean more than financial efficiency. The next generation of EU budget indicators should measure what truly matters for citizens: impact, fairness and tangible results that improve lives. By capturing social and health outcomes alongside economic ones, the EU can demonstrate that its budget delivers real value to Europeans. For high-impact areas such as childhood cancer, maintaining visibility within the performance framework is essential to ensure continued progress in research, access to care and survivorship. A performance framework that values health, collaboration and societal wellbeing will make the EU budget more transparent, effective and closer to its citizens.
Read full response7 Nov 2025
KickCancer, a Belgian foundation financing research in paediatric oncology and a member of Childhood Cancer International Europe (CCI Europe), welcomes this consultation on the role of civil society in the next MFF. Through our work, we ensure that the needs and voices of children with cancer, their families and survivors are represented in national and European policy debates. Our experience shows that civil society is indispensable in delivering the EUs health, research and social objectives. Childhood cancer remains the leading cause of death by disease in children over one year old in Europe, with over 6,000 deaths and 35,000 new diagnoses each year. EU support through Horizon Europe, EU4Health, Europes Beating Cancer Plan and the EU Cancer Mission has already made a major difference improving access to care, fostering cross-border collaboration and strengthening survivorship initiatives. KickCancer and other civil-society actors have been key partners in translating these EU priorities into real progress on the ground. Examples of EU-supported initiatives include: The TREL Project, twinning paediatric oncology centres to exchange expertise and reduce inequalities in care; EU-CAYAS-NET, improving survivorship and mental health for young survivors; UNICA4EU, advancing the uptake of clinical AI tools; ITCC-P4, fostering publicprivate partnerships in paediatric oncology drug development; ERN PaedCan, improving access to standard-of-care treatment across borders; and many other EU-funded projects building a European childhood-cancer ecosystem. These results clearly show that EU funding for civil society generates European added value and tangible public benefit. However, without sustained EU support, the contribution of patient organisations and foundations risks being weakened. Civil-society organisations bridge policy and practice by shaping care, raising awareness, funding research and supporting families. They embody the EUs values of solidarity, inclusion and participation. Guarantee operating grants for health civil society Operating grants under EU4Health are essential to maintain stable and independent participation of patient organisations and foundations in EU policymaking and project delivery. They enable long-term strategy, coordination with national actors and evidence-based contributions to EU initiatives. The next MFF must ensure continuity and accessibility of these grants for healthcare civil-society organisations, including those working in childhood cancer. Enable independent and meaningful participation in EU projects Civil-society organisations must remain eligible as full partners in EU-funded projects. Their expertise improves project relevance, communication and sustainability. Future programmes should include simplified procedures and dedicated calls for civil-society-led consortia in health, research and social innovation. Support the evidence-building role of civil society Foundations and patient organisations collect and translate unique data on unmet needs, research gaps and patient outcomes. EU programmes should fund these evidence-generation activities, which strengthen the knowledge base for policy and enhance accountability and transparency. Promote cross-border collaboration and civic engagement Networks such as CCI Europe foster alignment in paediatric cancer care within the EU and beyond, by developing and promoting evidence-based standards such as the European Standards of Care for Children with Cancer. Continued EU funding for cooperation, awareness and education projects will sustain this solidarity, strengthen European identity and empower young survivors as advocates for change. In conclusion, civil society is a key partner in delivering Europes values and priorities. Stable, predictable funding for organisations like KickCancer is essential to ensure that EU investment continues to save lives, reduce inequalities and promote solidarity across borders.
Read full responseResponse to European Research Area (ERA) Act
10 Sept 2025
KickCancer is a Belgian foundation with an international scope. Its non-profit mission is to support scientific, clinical, and fundamental research in paediatric oncology, and more broadly to foster all activities aimed at curing childhood cancers and improving the medical follow-up of treatments, both during and after recovery. We actively finance research projects to ensure that children with cancer gain access to the most innovative and effective treatments, while also reducing the long-term toxic effects of current therapies. Paediatric cancer is the leading cause of death by disease in Europe for children over one year of age, and two-thirds of survivors suffer long-term side effects from toxic treatments. Science and innovation hold the promise of safer, more effective therapies. KickCancer welcomes this Call for Evidence, as a strong European Research Area (ERA) is essential to deliver breakthroughs in paediatric oncology. 1) The need for cross-border collaboration Multi-country clinical trials (MCCTs) are crucial to accelerate drug discovery and development. Cross-border data sharing, scientific collaboration, and structural funding must underpin high-quality paediatric oncology trials. Harmonised digital tools - such as AI, the European Health Data Space (EHDS), Real World Evidence (RWE) platforms, and consistent data standards - will strengthen MCCTs and speed up drug development. 2) Europes potential in paediatric oncology KickCancer underlines the competitive advantage of a strong EU Single Market R&I ecosystem. Europe can become a global leader in patient-centred innovation for children with cancer, attracting investment and talent. Yet paediatric oncology remains marginal within the health R&I landscape, with persistent barriers slowing drug development. 3) The role of academia Because paediatric cancers are rare, commercial research offers little return on investment. Academic centres are essential to bridge this market failure. Global leadership in this field requires collective efforts to: - Support fundamental and translational academic research for first-in-child treatments. - Build trial-ready infrastructures to accelerate access to innovation. - Create alternative business models for ultra-rare diseases (e.g. joint procurement contracts). Such investments would speed access to effective medicines with reduced toxicity, improving survivors long-term health. 4) Advanced therapies Advanced Therapy Medicinal Products (ATMPs), such as CAR-T and omics-based therapies, hold great promise in paediatric oncology. Academic centres increasingly drive their development. Explicit recognition of academias role alongside industry in the ERA Act would reinforce the EUs commitment to supporting all actors in the R&I ecosystem and accelerate childrens access to cutting-edge therapies. 5) Investment and sustainability Ensuring sustainable access to child-centred therapies requires an investment-friendly environment that combines public and private funding. This is vital to reduce financial risk in ultra-rare fields like paediatric oncology, which do not attract traditional venture capital. Investing in paediatric oncology R&I will benefit not only patients but also society and the economy: lowering mortality, improving workforce productivity, expanding knowledge, attracting talent, and cementing Europes leadership in patient-centred innovation. 6) The case for a strong ERA Paediatric oncology clearly illustrates the need for a strong European Research Area. Only a single, borderless R&I market can deliver the scale required for cross-border trials, genomic data sharing, and researcher mobility. By prioritising investment, boosting the uptake of innovations, and ensuring equitable access to excellence, the ERA Act can transform Europe into a global leader in paediatric cancer research and deliver life-saving therapies to children across all Member States.
Read full responseResponse to Biotech Act
11 Jun 2025
Loncologie pédiatrique est un domaine dont le potentiel reste encore largement sous-exploité. Un véritable marché unique de la biotechnologie dans lUnion européenne constituerait le cadre idéal pour la recherche, le traitement et, à terme, la guérison du cancer de lenfant. Le marché biopharmaceutique inclut le développement de nouveaux médicaments pédiatriques très prometteurs et de thérapies basées sur les « omics », y compris les Médicaments de Thérapie Innovante (MTI) tels que les thérapies CAR-T (chimeric antigen receptor). Ce secteur spécifique de la biotechnologie européenne représente ainsi une opportunité unique pour positionner lEurope à la pointe de linnovation et de la compétitivité dans le domaine de la santé mondiale. Devenir un leader mondial de linnovation équitable et centrée sur les patients dans le domaine des cancers pédiatriques exige une approche collective et transfrontalière. Une approche qui favorise un développement pédiatrique plus précoce et dédié, encourage la recherche et linnovation dès les premiers essais chez lenfant (« first-in-child »), et incite au développement de médicaments spécifiquement nécessaires aux enfants atteints d'un cancer. Le développement de ces produits biopharmaceutiques devrait viser à developper les traitements les plus efficaces pour les jeunes patients, avec le moins deffets secondaires physiques et mentaux possible. Dans le domaine de loncologie pédiatrique, les essais cliniques multicentriques et multinationaux (MCCTs) sont essentiels à la recherche, le traitement et une prise en charge véritablement centrés sur le patient et innovants. Ces essais permettent daccélérer les délais de développement et délargir laccès des patients aux thérapies. Étant donné la faible taille des populations concernées, le partage transfrontalier des données et la collaboration sont indispensables pour assurer la robustesse des MCCTs. Une mise en œuvre harmonisée des infrastructures numériques, telles que lEspace européen des données de santé (EHDS), lutilisation des données issues de la vie réelle (RWE) et une cohérence des données à léchelle européenne, renforceront la recherche via les MCCTs et accéléreront le développement de produits biopharmaceutiques. Ces produits doivent être mis sur le marché aussi rapidement et à un coût aussi réduit que possible. Pour permettre un développement rapide et innovant des médicaments, ainsi que pour garantir leur accessibilité financière, des investissements importants et continus sont nécessaires. La combinaison de financements publics et privés permettrait de garantir une disponibilité durable de capitaux afin de limiter les risques financiers liés à la recherche biopharmaceutique innovante. Le marché des biotechnologies offre la possibilité de concevoir un modèle permettant la mise à disposition de traitements contre le cancer pédiatrique à un coût abordable. Cela suppose une utilisation efficace des chaînes dapprovisionnement et des capacités de bioproduction afin de réduire les coûts de développement. Ce modèle à faible coût et à forte valeur ajoutée bénéficiera non seulement aux patients, mais aussi à la société européenne, à son économie et à sa compétitivité. Il contribuera, entre autres, à réduire la mortalité, augmenter la productivité et attirer une main-dœuvre hautement qualifiée.
Read full responseMeeting with Olivier Chastel (Member of the European Parliament) and CCI Europe
28 Jan 2025 · Politique de santé de l'Union européenne
Meeting with Estelle Ceulemans (Member of the European Parliament)
27 Jan 2025 · Dossier SANT à venir
Meeting with Vlad Vasile-Voiculescu (Member of the European Parliament) and CCI Europe
20 Nov 2024 · Introductory Meeting
Meeting with Sandra Gallina (Director-General Health and Food Safety) and Université libre de Bruxelles
4 Dec 2023 · Meeting on stimulating medicines development in paediatric oncology
Response to Revision of the EU legislation on medicines for children and rare diseases
6 Jan 2021
KickCancer is a Belgian foundation with the mission to improve the survival chances of children with cancer, to reduce the toxicity of treatments and thereby restoring them to their full health after treatment.
KickCancer was founded after the difficult experience of its founders, the parents, the step-father and one uncle of a 12-year-old boy who relapsed from an aggressive rhabdomyosarcoma subtype. At that time, despite dismal survival chances, the only available treatment consisted in old, off-patent, off-label drugs. No ongoing clinical trial, in Europe or abroad, offered better prospects of treatment, which came as a shock to the founders – who candidly expected that children would come first in health policies– while they painfully realised that children, in truth, come last for the development of innovative therapies.
For this reason, KickCancer warmly welcomes the Commission’s initiative to review the Paediatric Medicines and the Orphan Drugs Regulations. We also endorse CCI-Europe’s and SIOP Europe’s joint contribution to the roadmap but wanted to elaborate separately on certain items.
On the definition of unmet medical needs, we would like to stress the importance of the creation of a framework that will allow for a flexible and evolving definition of the concept. Today, there is an urge to identify agents that will improve the cure rate of diseases where there are no therapeutic options or where the only options are too toxic but unmet medical needs will remain (but evolve) as long as the existing treatments cause acute or long-term side effects.
In a small patients’ pool like paediatric oncology, we cannot waste the hopes of families and the precious last days of terminal patients with a clinical trial unless there is a consensus that the agent, or combination of agents in trial is the best option according to our current scientific knowledge. This consensus needs to be based on scientifical evidence and concurring discussions between relevant stakeholders: pharma companies, researchers, clinicians, regulators and patients.
For rare diseases like paediatric cancers, the legislative context should also encourage flexible trials such as platform trials because they allow a direct and efficient comparison between different treatment options and allow the creation of new treatment arms when relevant without going through the hurdle of approval of a new clinical trial.
This flexible approach should be followed until a new agent concretely reaches the patients: from its market authorisation to the reimbursement decision by national Health Technology Assessment. To this end, a tighter alignment of the findings required for both the market authorisation and the reimbursement is a prime urgency because most innovative drugs are often costly and if they are not reimbursed, it creates a very anguishing and frustrating environment for patients and their family, which can lead to a ‘diverted’ use of philanthropy when a patient’s family must organise a fundraiser to afford a treatment.
This also builds on our wish to create a common procedure for the reimbursement of innovative drugs across the Member States (MS): not only would that speed up access for patients but it would also make it more likely that those innovative drugs are placed on the market of all MS. KickCancer comes from a small MS and we know of several drugs that have not been authorised on the Belgian Market. Those drugs can be purchased through France or Germany but a product’s unavailability on a given national market renders it less accessible because of the complexity of a transnational purchase and because a drug purchased abroad is not reimbursed. If a new regulations result in the development of several innovative drugs aimed at ultra-rare diseases like paediatric cancers, as we are advocating, several pharmaceutical companies may end up being reluctant to file a procedure for such a new product if it only concerns a handful of patients a year in the small
Read full responseResponse to Pharmaceutical Strategy - Timely patient access to affordable medicines
7 Jul 2020
KickCancer is a Belgian foundation advocating better treatments for children, adolescents and young adults with cancer and a better legal framework to ensure more clinical and fundamental research and an accelerated access to innovation.
Access to innovation
Today many anti-cancer drugs are developed in adult cancer indications while very few benefit children.
The Paediatric Medicines Regulation must be reviewed in order to ensure that adult cancer drugs with a relevant mechanism of action be tested in the concerned younger population. This amendment would mirror the Race for Children Act adopted by the USA in 2017 and ensure that European patients also benefit from innovative drugs.
The Orphan Drugs Regulation must also be reviewed to stimulate more research in the field of rare indications like paediatric cancers.
We need to tap into the potential of molecules that have already been granted market approval for an adult indication or of patented molecules, the development of which has been abandoned by the patent holder. Today, only the market authorisation or patent holder can set up a clinical development that will lead to the market authorisation of the new indication or of the new drug. This leads to regrettable consequences:
- For new indication of approved molecules: Children only get access to the drug with great delay and although a drug can be proven safe and effective in an academic setting for a given paediatric cancer indication, off-label use will be the only way to administer the drug. Off-label drugs not being reimbursed, it creates a real access barrier for patients.
- For the repurposing of abandoned molecules, it is impossible to access to the drug and to organise clinical studies if the patent holder does not want to transfer its patents rights. This means that despite reasonable grounds to believe that a given molecule could save the life of young patients, patients and researchers have no way to access it.
Europe must organise discussion forums around drug repurposing in order to enable all stakeholders to agree on a mechanism that would remove such a barrier to a possible cure for young patients with cancer.
Finally, a faster, more efficient and centralised HTA assessment of all new drugs would contribute to improve a swifter and fairer access to innovative drugs in rare indications across Europe, including in smaller countries where today, the cost-benefit of the HTA procedure often leads to a lack of registration of orphan products by the market authorisation holder.
Clinical trials
Because paediatric cancers are all rare diseases, clinical trials must be conducted in a coordinated fashion across European countries. Harmonisation of the clinical trial approval procedures between all Member States would be a key enabler to accelerate research and access to innovative treatments for young patients with cancer.
It would also give a competitive edge to European pharmaceutical companies and accelerate access to innovation for all patients across the continent.
Incentivising clinical trials open in adult cancer to adolescents under 18 years of age is also an avenue to speed up access to innovation for young patients.
Data sharing & long-term follow-up
Real world data and clinical trial data are key to foster research. We would like to see the emergence of an overarching European initiative enabling data sharing across Europe, both between academia and industry. This would allow out-of-the box ideas to emerge and avoid duplication of efforts for all players.
Such a database would be the perfect harbour for long-term follow-up programs of young cancer survivors to identify and prevent long-term side effects.
It could also harbour artificial intelligence projects on the causes of cancer and resistance mechanisms. Such an initiative is urgent in a context of development of targeted therapies and a effort from many member states to encourage whole genome sequencing for all cancer patients.
Read full responseResponse to Europe’s Beating Cancer Plan
3 Mar 2020
The Belgian foundation KickCancer is thankful for the opportunity to give feedback on the EU Beating Cancer plan roadmap.
We are however worried that the current plan does not take into account the specific needs of some of its most fragile citizens: children, adolescents and young adults. Paediatric cancer is the leading cause of death by disease for children over 1 year of age (20%) and 2/3 young cancer survivors will suffer the burden of long-term side effects.
Prevention
Paediatric cancers cannot be prevented: children do not yet have detrimental habits (alcohol, tobacco…) and most of them have a sufficient level of physical activity.
Today, we do not understand the causes of paediatric cancer and a dedicated research effort is required in that direction. It is only by understanding those causes that we could implement efficient prevention policies.
Diagnosis
Early diagnosis is a powerful tool to detect cancer early and to soften the burden of the treatment while increasing survival chances. However, systematic screening programs for children would prove inefficient and nearly impossible as paediatric cancers are (fortunately) very rare. Only for children with a known and detected cancer predisposition syndrome would that strategy prove useful. Today, about 5 to 8% of paediatric cancer cases have an identified genetic cause but we believe that this is underestimated. Again, specific research projects are needed to improve our understanding.
Treatment
Most children with cancer are treated with old (cytotoxic) drugs, oftentimes used off-label. They can bear higher doses than their adult counterparts, which leads to higher cure rates, but that does not go without acute and long-term toxicity. Children have a developing body and more targeted therapies could help reduce the long-term burden of the treatments.
Off-label drugs are often not reimbursed by national payers, which causes accessibility issues for patients while most of those drugs are considered as “standard of care” in an international protocol. We must ensure that all new drugs are approved on label for paediatric indications when that is relevant.
When a given oncologic drug is developed for an adult cancer but seems relevant for children, it must be tested in children without delay. This would require the amendment of the Paediatric Medicines Regulation. Ideally, this review should be in line with the US regulation Race for Children Act.
We also need to foster an environment where new drugs aimed at children first become economically viable and attractive to develop. The Orphan Drugs Regulation should also be revised so that the right incentives and support framework are put in place to allow for the development of more paediatric drugs.
In this respect, the issue of “shelved drugs” should be tackled: when a drug is no longer developed by its patent holder, third parties who can demonstrate that this drug could be useful for certain patients should receive be allowed to take over the development of that drug. It is not acceptable that drugs, which are expected to be efficient for a “non-profitable” category of patients, remain out of reach.
Finally, a proper regulatory framework for the price of innovative drugs must be put in place. Innovation must be rewarded but new drugs must remain accessible to patients, no matter what their economic situation is. Transparency in this respect is key.
Quality of life of patients and survivors
2/3 children surviving cancer will suffer from long-term side effects caused by their treatment.
Strategies must be put in place to alleviate that burden: a central coordination of the follow-up after treatment, regular screenings to prevent side effects (such as secondary cancers or other diseases), a proper transition from the paediatric to the adult setting.
Transparency about the long-term side effects (what we know but also what we don’t know yet) must be encouraged.
Read full responseMeeting with Annika Nowak (Cabinet of Commissioner Vytenis Andriukaitis)
22 Mar 2018 · Paediatric medicines