Welcoming FH China to the FH Europe Foundation Network

Strengthening global connections to improve the lives of people living with inherited lipid conditions 

The FH Europe Foundation is delighted to welcome FH China as new member of our international Network. This partnership marks a significant step in amplifying patient voices, strengthening global collaboration, and accelerating progress for communities affected by familial hypercholesterolaemia (FH) and related conditions. 

Founded by Nazhen “Jenna” Chen, a heterozygous FH patient with family members living with the condition, FH China has rapidly grown into a national force for patient advocacy, scientific engagement, and awareness. Key achievements include: 

• Establishing China’s national FH patient registry 

• Promoting research collaboration with leading clinicians and institutions 

• Hosting the first FH China Conference within a major Rare Diseases event 

• Advocating for improved access to diagnosis and treatment, particularly for HoFH 

• Launching a patient-focused website to strengthen community connection and support 

As one of the few patient-centred FH organisations in East Asia actively shaping the national dialogue on genetic lipid conditions, FH China brings unique perspectives, determination, and cultural insight to the global movement. 

FH China’s connection with the FH Europe Network began even before formal membership. They participated in the 2024 Annual Network Meeting in Vienna and the 2025 Meeting in Zagreb, where Jenna presented on FH China’s work, challenges, and aspirations. These engagements cemented the alignment between FH China’s mission and FH Europe’s values, emphasising the importance of international collaboration in research, policy, and patient engagement. 

Through the Network, FH China aims to: 

• Expand advocacy for HeFH, HoFH, FCS, and elevated Lp(a) 

• Access shared tools, including communication materials, policy frameworks, and patient education resources 

• Connect China’s experiences with global discussions, ensuring Asian patient communities are represented and heard 

Their membership brings fresh energy to the Network, enhancing diversity, cultural insight, and research collaboration. With links to clinicians like Dr. Chu, opportunities emerge for joint workshops, knowledge exchange, and bridging global research efforts, particularly in HoFH and emerging Lp(a) therapies. Their work on Mandarin-language awareness tools and localisation of FH Europe resources will make the Network more globally relevant and inclusive. 

As part of the FH Europe Foundation, FH China will benefit from shared expertise across more than 30 patient organisations, including high-level policy guidance, participation in international advocacy initiatives, support for communication campaigns, and mentorship from organisations that have successfully influenced national FH policies. 

Looking ahead, 2026 promises meaningful collaborations, including: 

• A joint elevated Lp(a) roundtable in China with researchers, policymakers, clinicians, and patients 

• Localisation of FH Europe communication materials in Mandarin 

• Further exchanges with Asian partners, such as FH Care Singapore 

• Integration of Jenna into FH Europe’s Ambassador community 

Together, we are building a global environment where people affected by inherited lipid conditions—no matter where they live—are supported, understood, and able to access the care they deserve. 

We are proud to welcome FH China into the FH Europe Foundation Network. Their leadership, passion, and commitment will enrich our international community, and we look forward to many years of collaboration, learning, and impactful advocacy together.