HAEi participates in European Parliament panel debate
HAE is the perfect example of why urgent, coordinated European Union (EU) action on rare diseases is long overdue. Despite a simple blood test, there are prolonged diagnostic journeys, inconsistent standards of care, and unequal access to treatment.
“HAE has the potential to become a beacon of hope for all rare diseases.”
–Henrik Balle Boysen
Addressing HAE Challenges Across Europe
HAEi was invited to a recent European Parliament panel debate, organized by CSL Behring, about improving HAE care. The discussion brought together policymakers, medical professionals, and patient advocates. Henrik Balle Boysen, President of HAE International (HAEi), emphasized that HAE is a manageable condition, but barriers like reimbursement delays and rigid eligibility criteria for prophylactic treatments remain.
“HAE patients must not have to prove multiple attacks before accessing life-saving medication.”
– Henrik Balle Boysen
Findings from HAEi’s own State of Management report across 25 EU Member Organizations revealed critical gaps in awareness and care within the EU:
- Only 4% of member organizations rated general physicians’ knowledge of HAE as ‘Good’ or ‘Very Good’
- Without medication, more than half of respondents stated that HAE highly limits education, work, and social opportunities.
- Despite the majority of countries allowing self-administration of modern treatments, access remains uneven.
Advancing Rare Disease Policies
The debate underscored the need for an EU Action Plan on Rare Diseases, which could enhance coordination among stakeholders, streamline treatment approvals, and foster innovation. Enrique Terol, Health Counsellor at Spain’s Permanent Representation to the EU, highlighted Spain’s leadership in supporting a potential World Health Assembly Resolution on Rare Diseases in 2025. This move could strengthen international efforts.
Advancements like the European Reference Networks (ERNs) and the Angioedema Centers of Reference and Excellence (ACARE) are improving access to experts. However, further integration into national health systems is crucial. Former European Commissioner Vytenis Andriukaitis (MEP) stressed that rare diseases must remain a priority, with systems designed to meet patient needs.
Speakers also discussed how initiatives like the EU Life Sciences Strategy and updates to pharmaceutical legislation can improve access to next-generation therapies for rare diseases. MEP Stine Bosse highlighted the broader implications of failing to diagnose and manage rare diseases effectively: “Patients should be at the center of the Life Sciences Strategy, and collaboration with industry and investors is essential for building a competitive and resilient Europe.”
Collaborative Efforts and Empowerment
Experts agree that multistakeholder collaboration is essential. Professor Mauro Cancian from the University of Padua pointed out the critical role of partnerships among patients, researchers, healthcare professionals, and industry in accelerating diagnosis, clinical trials, and equitable treatment access.
HAEi continues to advocate for professional education programs to help physicians recognize and treat HAE, empowering patients with tools like the HAE TrackR app and supporting individualized care plans based on quality of life rather than attack frequency.
By fostering collaboration among governments, regulators, and the rare disease community, Europe can ensure that advancements in HAE treatment translate into meaningful improvements in patient lives. Bold EU action, combined with national-level implementation, is critical to achieving a future where every person with HAE can live their life to its fullest potential.