ACARE: An update from Rachel Annals, HAEi’s Coordinator, Global Advocacy and ACARE
My primary focus is supporting the organization of the forthcoming first ACARE Global Angioedema Forum (GAF).
As an ACARE project, the GAF is a joint event between GA2LEN and HAEi, designed to provide an environment for scientific exchange across all forms of angioedema. Our faculty of more than 50 invited experts from 35 countries is complete. These leaders in the field will lead healthcare professionals worldwide through scientific sessions on the latest in angioedema. In this first GAF, we will have a special focus on HAE.
There is a considerable amount to do to pull together such a large meeting. My HAEi colleagues Debs Corcoran, Karina Langsager, and I are working together with ACARE on the agenda, attendance, and logistics (to name but a few parts of the meeting!). This has entailed fortnightly calls with our friends at the ACARE Secretariat.
In the last few months, I have reviewed all copy for the GAF website, which is now live at glw.haei.org/gaf. The preliminary program is now online, too, and with registrations recently opened, we have seen lots of interest in attendance. Additionally, there has been a solid response to the call for abstracts.
There is still much work to do, but all at HAEi and ACARE believe that GAF is a vital scientific conference for all healthcare professionals currently active in angioedema. We look forward to welcoming the scientific world of angioedema to Copenhagen in October and introducing them to the world of advocacy when GAF meets GLW on Saturday afternoon.
/Rachel
ACARE activities calendar
4 to 6 September 2024 Bradykinin Symposium 2024
ACARE will host its Bradykinin Symposium 2024 in Berlin. The symposium will be complemented by the ACARE Angioedema School on Wednesday 4 and Thursday 5 September 2024, a training program for clinicians who treat patients with recurrent angioedema.
>> You can find out more on the Bradykinin Symposium website
ACARE education project spotlight: LevelUp webinars
The ACARE LevelUp Webinar series consists of 6 webinars, each with a 50-minute lecture with 10-minute question and answer sessions. Some of the most esteemed physicians in the angioedema field host the webinars. Each one-hour webinar deals with different questions and topics, which include guideline recommendations and updates, recent insights from publications, advances in our understanding of angioedema and the comorbidities that go along with it, biomarkers in angioedema and the biology of mast cells and the contact system including C1 inhibitor, kallikrein, bradykinin and its receptors and many more.
>> Find out more about webinars that have happened and are coming up here
4 to 5 October 2024 ACARE Global Angioedema Forum
The first ACARE Global Angioedema Forum (GAF), the scientific program for the 2024 HAEi Global Leadership Workshop, takes place in Copenhagen.
>> Read more about the first ACARE Global Angioedema Forum (GAF) here
ACARE scientific project spotlight: HAPY
The HAPY project is an anonymized questionnaire for patients with HAE in pregnancy. The pregnancy can be any length of time in the past. The information gained from this survey will be used to retrospectively collect and evaluate details on the influence of pregnancy on HAE and includes the periods before, during, and after the pregnancies/breastfeeding periods and should include, among other things, disease activity, medication, contraception, concomitant diseases and outcome of the pregnancies. The survey should take about 20 minutes to complete. Data collected is anonymous and analyzed electronically. We plan to publish the data.
We encourage as many HAE patients who have experienced pregnancy as possible to participate.
Contact Thomas Buttgereit, one of the two project leads, for more information: ed.etirahc@tieregttub.samoht
>> Find out more about HAPY and other ACARE projects on the ACARE website
Tips on becoming an ACARE
You may remember in the last issue of Global Perspectives, we heard from three clinicians from the Americas region about their experiences with the ACARE process and its impact on their care for people with HAE. In a follow-up, here we present the tips on becoming an ACARE from Dr. Adil Adatia of the University of Alberta, Canada; Prof. Ivan Cherrez Ojeda of Espiritu Santo University, Ecuador; and Dr. Oscar Manuel Enrique Calderón Llosa of Clínica SANNA el Golf, Peru.
Their tips are:
- Understand the significance: ACARE status brings credibility and professionalism, which can open doors to valuable research opportunities and collaborations.
- Commit to research: Be prepared to undertake meaningful research projects in angioedema.
- Leverage collaboration: Utilize your ACARE status to extend invitations for collaboration, not only within your local community but also on a regional or even international level.
- Engage with patient communities: Being actively involved in the angioedema community can provide valuable insights into patient needs, raise awareness of your clinic, and help plan future research endeavors.
- Invest in patient education and support services: Develop comprehensive patient education programs and support services that empower patients to manage their condition effectively.
- Stay informed: Stay updated on the latest developments and opportunities within the angioedema field. ACARE accreditation begins a journey of continuous improvement, emphasizing the importance of ongoing continuing medical education.
- Embrace a comprehensive care philosophy: Prioritize establishing a multidisciplinary team. A holistic approach to patient care is fundamental to meeting the ACARE standards.
- Document and standardize procedures: Standardizing care processes is vital for consistency and quality in patient management and is a critical aspect of the ACARE accreditation process.
Don’t give up: Work hard to offer a “safe place” to patients with HAE.
>> Visit the ACARE website if you’d like to know more about ACARE and the accreditation process
