From Rachel Annals
Coordinator, Global Advocacy and ACARE
ACARE is a joint partnership between HAE International and the non-profit organization Global Allergy and Asthma Excellence Network (GA2LEN). Rachel Annals is our Coordinator, Global Advocacy and ACARE.
HAEi and ACARE share the goal of strengthening connections between healthcare centers and patient organizations to support the global HAE community. In fact, “Interaction with and support of patient organization(s) including HAEi and its partner organizations” is one of the requirements for centers seeking ACARE accreditation. One way we support this is by raising awareness of HAEi’s mission and activities through regular e-newsletters sent to the ACARE network, highlighting our important work in the field of HAE.
We know the value of personal contact and making connections both in the country and across borders. To facilitate these, I am writing to all current ACARE centers to introduce HAEi and encourage each center to work closely with us – particularly with our Regional Advocacy team, who live and work in their respective regions and are well-positioned to provide localized support and guidance. By fostering relationships between centers and promoting collaboration through shared learning, we aim to build a more connected and resilient global HAE care community.
We’re delighted to share that planning is underway for the 2026 Global Angioedema Leadership Conference (GALC), which will take place from 26–29 March in Madrid, Spain. This joint HAEi and ACARE event brings together patient leaders, healthcare professionals, researchers, and industry representatives to participate in separate scientific and advocacy leadership programs, ultimately combining into joint sessions on Saturday afternoon for a truly inclusive experience.
If you are interested in becoming an ACARE, you can find out more here.
Spotlight on current ACARE projects
HAPY: A questionnaire has been developed to retrospectively gather insights from individuals with HAE and their physicians on how pregnancy may influence the condition. The survey looks at the time periods before, during, and after pregnancy – including breastfeeding – and covers topics such as disease activity, medication use, contraception, coexisting conditions, and pregnancy outcomes.
All data will be collected anonymously and analyzed electronically, with plans for publication once the evaluation is complete.
ACARE has shared a few updates that make participation even easier. The pregnancy can have occurred at any point in the past, and there is no longer a requirement for physicians to sign the consent form. This change allows doctors who know HAE patients with a history of pregnancy to share the survey more freely, now that it is fully anonymous.
To understand more about HAPY, click here.
SHAERPA: The SHAERPA project is an international, multi-center academic study that is both prospective and partly retrospective in nature. This observational, cross-sectional project aims to gather real-world data to help develop practical guidance on how to safely discontinue androgen treatment in patients with HAE. The ultimate goal is to support physicians and improve patient care globally.
Physicians across the ACARE network, and those outside of it who treat HAE patients, are strongly encouraged to take part.
The study involves both physician and patient questionnaires and focuses on understanding why, how, and with what outcomes androgens are discontinued in HAE. Specifically, it aims to:
- Identify the reasons behind stopping long-term androgen prophylaxis
- Examine the protocols used during androgen withdrawal
- Assess the consequences of stopping treatment, including the effectiveness of various approaches
- Use the collected data to generate evidence-based recommendations for safely discontinuing androgens in clinical practice
To understand more about SHAERPA, click here.