Workshop: Growing a small organisation into a national leader

Facebook group with no funding and no government contacts. A seat on the committee that decides which cancer drugs Taiwan’s national health insurance will pay for. That’s the distance the Taiwan Young Patient Association (TYPA) has travelled since 2017, and at Advocates Day of the World Bladder Cancer Patient Forum 2026 in Hong Kong, its Secretary General, Eric Liu, walked our members through exactly how.

From support group to seat at the table

TYPA started when Eric’s co-founder, newly diagnosed with breast cancer, found almost no resources for young patients in Taiwan and began sharing her story online instead. That community grew steadily: by 2020, TYPA registered as an NGO to gain access to official meetings, and by 2022, Eric was sitting on advisory boards in Taiwan’s Congress. Today, he holds a patient seat on the committee that appraises new treatments for national reimbursement, following a pathway he mapped out for the room:

• A pharmaceutical company applies to fund a new treatment
• The National Health Insurance Administration and the Center for Drug Evaluation carry out a health technology assessment
• Patient groups submit evidence through a dedicated opinion-sharing platform
• An expert committee reviews the combined report, before it reaches the appraisal committee, where Eric now sits as a patient representative
• Price negotiation with the company follows, and the treatment is announced

What actually moved the needle

Along the way, TYPA built a public petition campaign (a proposal that reaches 5,000 signatures forces a government response), an annual immuno-oncology forum bringing physicians and officials into the same room, and a breast cancer patient journey guidebook built from interviews with 48 young patients. The results speak for themselves: Taiwan’s government funding for immuno-oncology treatments has grown roughly fourfold since 2020, and the number of covered indications has nearly tripled.

Eric distilled what made that growth possible into a short list of lessons for the room:

• Learn the clinical evidence. Don’t just ask for help, understand the data well enough to propose solutions.
• Learn the system. Knowing how policy and budgets actually get decided is what lets advocates negotiate rather than just request.
• Collect patient experience data. What patients live with every day is often invisible to policymakers until it’s written down.
• Translate medicine into everyday language. TYPA explains T-cells as the body’s “ID checkers” and genetic testing as “checking the body’s ID card,” so patients and officials alike can follow along.
• Turn clinical outcomes into real life. A treatment that adds a few centimetres of height is easy to dismiss on a spreadsheet, and much harder to dismiss once it’s explained as the difference between a child needing 24-hour care and one who can shower, dress and eventually live independently.

Mapping who to talk to, and when

Eric’s final tool was a simple stakeholder map, plotting every contact by interest and influence:

• Partner closely with those high on both, government decision-makers and medical societies, and bring them solutions, not just problems
• Keep warm with influential contacts who aren’t yet engaged, for when their support is needed later
• Mobilise and equip other patient groups who share the goal but lack the resources to engage government alone. TYPA did this by uniting 22 cancer patient organisations behind a shared campaign for a national cancer drug fund
• Monitor lightly everyone else, including media, and call on them when a message needs to travel further

A shared challenge, wherever you start

The workshop turned hands-on from there, with participants mapping their own organisations’ constraints. Across very different countries, from Sweden to Kenya to Australia, the same word came up again and again: resources, whether that meant government grants, membership fees, or donor funding. The group traded ideas on reaching new funders beyond the usual pharmaceutical partners, from cosmetics brands to cruise lines, and on tapping trusted community networks like Rotary clubs to spread the word further than any campaign budget could alone.

As Eric put it to close the session: advocacy isn’t about one group winning. It’s about building partnerships between patients, policymakers, clinicians and industry that turn patient needs into solutions everyone has a reason to support.