How do you formalise, develop and manage a childhood cancer foundation?

Developing and managing a childhood cancer foundation or childhood cancer parent group requires both heart and structure. Currently Childhood Cancer International (CCI) represents 217 member organisations in 100 countries and 6 continents. Before you start a childhood cancer foundation or parent group, find out if there is already an established organisation in your country. Learning from your own country’s legislation and governance, will save a lot of time and effort. 

Starting a foundation especially for something sensitive like a childhood cancer parent support group, requires careful planning before registering anything formally. 

Define Your Purpose and Mission

Before anything else, be clear on the following:

What is the problem you want to address and why? Decide on who you want to support, where the patients are being treated and how you are going to support them, e.g. Supporting children and teenagers with cancer in [city and country] during treatment. 

Who are your target beneficiaries? Will it be the patients (children, teenagers, Adolescents and Young Adults (AYA), parents and families, siblings, survivors), or will your focus be on advocacy, awareness raising, or medical support to the treatment centres you intend to serve? 

A vision is a future-oriented statement that describes the long-term impact or change your organisation hopes to achieve. A vision is about the ultimate outcome, not the activities you do.

A mission is a practical statement of what your organisation does today to achieve the vision. The mission is about your daily work and programmes, while the vision is about the world you want to create. Keep your mission focused; broad ambitions can delay your start.  

Conduct a Needs Assessment

To get the buy-in and support from the beneficiaries you intend to serve, you need to speak to parents, families, and hospital staff to understand their needs. During focus group discussions you will be able to identify the needs be it emotional support, accommodation, transport, advocacy, etc. Check if similar organisations exist in your area or country to avoid duplication. If your groundwork is done well, it will help build credibility with donors and partners later.

Decide the Legal Structure

Countries around the world do not use the exact same legal structure term for a childhood cancer foundation or non-profit organisation. The concept exists worldwide (an organisation that does not distribute profits to owners), but the legal terminology differs depending on the country, legal system, tax structure, and regulatory authority. In global development and humanitarian work, the broader terms are often Civil Society Organisation (CSO) or Non-Governmental Organisation (NGO). For example, the United Nations commonly uses NGO or CSO rather than “non-profit organisation (NPO).” It is therefore important to source legal advice on the legal structure required by your country before you start  your foundation.

Identify Your Founding Team

Ideally you need a small team of 3 to 5 people that are committed to the cause. 

Look for parents with mixed skills in  finance, governance, healthcare knowledge, and lived experience (parent representation).

Decide roles such as a  Chairperson, Treasurer, Secretary, and Volunteer Coordinator. Commitment is crucial, especially for small parent-led groups.

Develop a Constitution or Governing Document

Your constitution or Memorandum of Incorporation (MOI) is needed for legal registration and forms the basis of good governance and should cover the following: 

- Name of the organisation

- Purpose and objectives

- Membership rules (if applicable)

- Board structure and roles.

- Decision-making processes

- Financial management rules

- Meeting frequency

Plan Your Initial Programmes

Rather start small with reachable targets, than trying to be everything for everybody. Identify 1–3 core activities to start with:

- parent support group meetings, 

- information sharing platforms that can be digital or printed guides. 

- advocacy for hospital or community support. 

Define short-term outcomes so you can measure and report on impact.

Prepare a Basic Budget

Unfortunately, you cannot do anything without funds. Even a small budget helps set realistic expectations and transparency to donors. Estimate initial costs for meetings, materials, transport, or small fundraising events. Identify potential funding sources such as donations, grants, crowdfunding, or corporate sponsorships.

The moral of good financial management is that because money is entrusted to you for vulnerable children and families, you must manage it honestly, carefully, and responsibly.

- Good financial management ensures funds are used for their intended purpose and deliver maximum impact. Resources should be used wisely for the benefit of the beneficiaries you serve.

- Accountability builds public trust and protects the organisation’s credibility. Be answerable for decisions and actions.

- In childhood cancer work, transparency is critical because families are vulnerable and donors are often emotionally invested. Operate in light, not in secrecy.

- Even small parent-led groups must maintain integrity because reputational damage can harm families and future beneficiaries. Do the right thing, even when no one is watching.

- In a childhood cancer setting, fairness ensures no family is disadvantaged because of relationships or influence. Treat people equitably and consistently.

- Good management protects vulnerable children and parents from secondary harm. Your moral principle should always be to protect and not to harm. 

Establish Governance Practices

Governance prevents confusion and protects beneficiaries. Good governance practices should be applied from the start: 

- Draft board policies to ensure that there is no conflict of interest, for decision-making and  safeguarding.

- Set up a bank account for organisational funds or seeding money and adhere to excellent  financial principles.

- Decide how decisions will be approved and documented and keep minutes of all the decisions that have been made.

Register the Organisation

Register your organisation according to your country’s legal system and ensure that you keep a record of their requirements. Make sure that you stay compliant regarding tax and other legal frameworks. Start small before expanding. Keep good records of attendance, meetings, and finances.

Build Partnerships Early

Connect with hospitals, paediatric oncology units, social workers, and existing NGOs regularly. Partnerships improve credibility and access to beneficiaries. Remain a trusted civil society partner by being honest, transparent, and willing to pivot – even though it might be difficult – in the best interest of the beneficiaries you serve.

REMEMBER YOU ARE NOT ALONE. THERE ARE MANY GROUPS WHO HAVE GONE THROUGH THIS JOURNEY AND WHO WOULD BE WILLING TO HELP YOU. PLEASE REACH OUT TO CHILDHOOD CANCER INTERNATIONAL (CCI) FOR KNOWLEDGE SHARING AND CAPACITY BUILDING SUPPORT.

References and read more

International Legal & Child Rights Frameworks 

These provide the normative basis for international childhood cancer foundations and are  foundational for advocacy alignment and programme legitimacy.

- United Nations (1989, Article 24) recognises the right of the child to the enjoyment of the highest attainable standard of health and access to health care services. https://www.ohchr.org/sites/default/files/crc.pdf

- United Nations General Assembly. (2015, SDG 3) highlights the goal of ensuring healthy lives and promoting well-being for all at all ages. https://docs.un.org/en/A/RES/70/1

- World Health Organization. 2021. CureAll framework: WHO global initiative for childhood cancer: Increasing access, advancing quality, saving lives (ISBN 9789240025271). https://iris.who.int/server/api/core/bitstreams/89c8fdf4-8156-4842-80ba-d87bfc1b1c91/content

International Childhood Cancer Networks & Models

Studying established global organisations helps structure governance and programming.

- Childhood Cancer International. (2023). About Childhood Cancer International. [Model: parent-led advocacy, global collaboration between NGOs and national organisation capacity strengthening). https://www.childhoodcancerinternational.org

- World Health Organization. (2020). Global Initiative for Childhood Cancer: An overview. (Models: Government-led health system strengthening, partnerships with NGOs, hospitals, and international agencies, focus on diagnosis, treatment, and survivorship).  https://www.who.int/initiatives/the-global-initiative-for-childhood-cancer

- St. Jude Children’s Research Hospital. (2022). St. Jude Global: Improving survival for children with cancer worldwide. (Model: Academic and hospital partnerships, clinical capacity building, data sharing, and research networks). https://www.stjude.org/global

- International Society of Paediatric Oncology. (2023). About SIOP. (Model: Professional clinical network, research collaboration, global congresses, and knowledge exchange). https://siop-online.org

- Union for International Cancer Control. (2021). Childhood Cancer and Global Cancer Control. (Model: Global advocacy coalition, policy development, multi-sector partnerships). https://www.uicc.org

International Nonprofit Governance Standards

For formalising governance structures in multinational organisations, these standards are critical when operating across jurisdictions.

- Organisation for Economic Co-operation and Development (OECD). n.d. Principles of Corporate Governance. https://doi.org/10.1787/9789264236882-en

- Independent Sector. 2015. Principles for good governance and ethical practice: A guide for charities and nonprofit organizations. Washington, DC: Independent sector. https://independentsector.org/resource/principles-for-good-governance-and-ethical-practice-reference-edition

- Charity Commission for England and Wales. n.d. The Essential Trustee. Set up a charity: step by step. https://www.gov.uk/government/publications/the-essential-trustee-what-you-need-to-know-cc3?utm_source

- International Federation of Accountants. Governance in the Public Sector & Not-for-Profit Guidance. https://www.ifac.org/knowledge-gateway/professional-accountants-business-paib/publications/international-framework-good-governance-public-sector-executive-summary?utm_source

- Transparency International. (2014). Anti‑bribery Principles and Guidance for NGOs (initiated by Transparency International UK and developed with NGO partners). https://archive.transparency.org.uk/sites/default/files/pdf/publications/Anti-Bribery_Principles_and_Guidance_for_NGOs_1.pdf

Strategic Planning & Organisational Development Literature

Key academic and practical texts. These provide evidence-based approaches to scaling, governance, and impact.

- Asana. 2026. How to build a strategic plan for your nonprofit. https://asana.com/resources/strategic-plan-for-nonprofit-template?utm_source

- National Council of Nonprofits. (2017). Strategic planning for nonprofits. https://www.councilofnonprofits.org/tools-resources/strategic-planning-nonprofits

- NYC Service. (2016, April). NYC Good governance blueprint: Best practices, resources, and tools for nonprofit executive directors and board members. https://df2000001ms2meag.my.salesforce.com/sfc/p/#f2000001MS2m/a/3Z000001E1eE/AsT0V3t_0JtFTd8zTAoHBzdHX_rJcO.RgEPwJ4ZuqpQ

- Boardable. 2026. Nonprofit Management 101: Basics, Skills and Career Path. https://boardable.com/resources/nonprofit-management-101/?utm_source

Safeguarding & Ethical Standards because childhood cancer foundations serve vulnerable populations.

-UNICEF. 2026. Child Safeguarding Toolkit for Business. https://www.unicef.org/childrightsandbusiness/media/1681/file/Child-Safeguarding-Toolkit-2026.pdf

- Save the Children. Child Rights Resource Centre. 2011. Keeping children safe: A toolkit for child protection. https://resourcecentre.savethechildren.net/pdf/kcstool1-_english.pdf