Interview with Maria Beekman-Kortekaas, Chairwoman of the Dutch patient organisation for hereditary angioedema (HAE The Netherlands), on the occasion of the world HAE Day 2025.

Dear Maria, would you please briefly introduce yourself and the Dutch HAE patient organization to our readers? 

Hello, members of HAE Junior! I feel honored to have the opportunity to share something about myself and HAE The Netherlands. My full name is Maria Beekman-Kortekaas, but you might also know me as Marijk, which is my Dutch nickname.  In the summer of 2022, I was elected president of HAE The Netherlands. When I started as president, the organization was going through a challenging time. Due to the pandemic, all activities had been on hold for several years, leading to a significant decline in membership. There was no active network anymore, which meant I had a substantial task ahead of me to rebuild the organization and get it back on track. We are well on our way with this – our membership is growing, our network is expanding and becoming more vibrant. However, we still have plenty of work to do before we can fully achieve our goals. Now that the basics are in place, we are focusing on children and young people. Noa, my daughter, has already managed to gather a group of youngsters and brought them together in a messaging app group where they are brainstorming about a tailored program for youngsters. Noa is also organizing an event specifically for young people. This year, she is participating in the LEAP program by HAEi, where she expects to gain valuable tips and tricks that will help her in her work with our youngsters.

Based on your experience, what is the level of HAE awareness in the Netherlands?

The level of HAE awareness has definitely improved over the years, thanks to efforts by our ACARE center in Amsterdam, HAE The Netherlands and HAEi. However, challenges remain. There are still many healthcare professionals (HCPs) outside hospitals who fail to recognize HAE when they have a patient presenting with recurrent swelling in their practice, which causes delays in receiving a diagnosis. This has already significantly improved in cases where people come in through the emergency department of a hospital with an abdominal attack or other severe swelling. Together with HAE specialists in the Netherlands, we have ensured that people living with HAE and their families are well-informed about what HAE is, what triggers they need to be aware of, what medication is available, as well as about clinical trials or future treatment options.

Could you please describe how HAE patients are diagnosed and treated as part of the Dutch healthcare system?

In the Netherlands, the diagnosis of hereditary angioedema (HAE) is typically made through laboratory tests. This includes measuring the levels and activity of the C1 esterase inhibitor (C1-INH) protein in the blood. Additionally, the C4 protein, which is involved in the process, is also analyzed. The diagnosis does not necessarily need to be made in an ACARE center; it often takes place in general hospitals. However, for initiating treatment, patients are frequently referred to one of the university hospitals. The largest group of patients is treated at Amsterdam UMC, as this is where clinical trials are conducted. After the diagnosis is confirmed, genetic testing is usually conducted to determine whether other family members also have HAE.

Our on-demand medication for attacks is delivered through a specific pharmacy, which also provides a home service to support patients and their caregivers in learning how to self-administer it. For those who are unable to self-administer, they take their medication to a local hospital whenever they experience an attack. We typically administer our long-term prophylaxis (LTP) ourselves at home. For those who are unable to do this on their own, a nurse from the home service visits them to administer the medication in the comfort of their own home. The fact that we are allowed to administer our medication at home and receive support from the home service if needed has greatly improved the quality of life for people living with HAE and their families. The Dutch, by nature, have a strong desire for self-reliance and control over their own lives. We still need to work on improving adherence to long-term prophylaxis (LTP) and on ensuring that on-demand medication is administered immediately as soon as we notice the onset of an HAE attack.

The Netherlands is one of the most innovative European countries in the field of life sciences research. What interesting opportunities does this offer to the Dutch HAE patient community?

Thanks to the excellent innovation climate in the Netherlands, our HAE expertise center in Amsterdam is able to bring all major clinical trials to the country. We are often part of the small group of countries that joins very early, which provides the Dutch patient community with early access to experimental medicines. At the same time, this allows us to contribute to global research efforts. Our leading HAE specialist, Dr. Cohn, is involved in all major studies conducted worldwide on HAE.

What would you advise Czech HAE patients when planning to visit, or even work or study in the Netherlands?

The Netherlands is a wonderful country to spend a holiday in. We have an excellent healthcare system, and hospitals are easily accessible, even for people who do not reside in the Netherlands. For HAE patients, it is crucial to have proper insurance coverage for medical expenses abroad. It is wise to check this with your insurance company beforehand.

It is also important to carry an English-language letter from your doctor, stating that you have HAE and specifying the medication you use. Additionally, make sure you bring enough on-demand medication to last through your holiday. Note that C1 esterase inhibitor is not routinely available in every Dutch hospital, but university hospitals generally do have it in stock.

If an HAE patient wishes to work in the Netherlands, they will need to obtain Dutch health insurance. It is important to schedule an appointment with a Dutch HAE specialist as soon as possible after relocating to the Netherlands to ensure continuity of treatment. There may be differences in medication between the Netherlands and the Czech Republic, which could require transitioning to different medications. The ACARE center in Amsterdam has extensive experience with this and is currently providing care for several labor migrants with HAE.

For students planning to participate in an Erasmus program in the Netherlands, it is easiest to bring medication from the Czech Republic for the duration of their stay. It is also important for them to check whether they have adequate health insurance coverage.

Czech HAE patients who wish to travel to the Netherlands for a holiday, study, or work are always welcome to contact HAE Netherlands. We are always willing to assist them wherever we can. By now, we have extensive experience with this, as the Netherlands is a popular country to live, work, study, and vacation. Remember, you are not alone. You are part of the global HAE family, and in this family, we support and help each other.

Is there anything that you'd like to share with the HAE Junior patient community?

Lastly, I would like to say that the Czech HAE Junior patient community is very lucky to have their patient organization and chairwoman, Camelia Isaic. Camelia works tirelessly to improve the lives of HAE patients and their families, not only in the Czech Republic but also across Europe as a board member of RIPAG, the patient advocacy group of ERN-RITA.

I encourage you to get involved as volunteers with HAE Junior. It is vital to ensure the continuity of projects, as it is too much work for the board members alone. Moreover, volunteering with your patient organization is not only incredibly rewarding but also a great learning experience. The skills you develop there will benefit you for the rest of your life.

Maria Beekman-Kortekaas is the president of HAE The Netherlands and serves as a patient representative for HAE on the RIPAG council. She is also actively involved with the National Alliance for Rare Diseases in the Netherlands and is an Eupati Fellow (EU-certified patient representative). Diagnosed with HAE in 2007 after a 30-year diagnostic journey, Maria is dedicated to improving the lives of those living with HAE and other rare conditions. She is married and the proud mother of Noa, who, fortunately, does not have HAE but is actively involved with HAE The Netherlands.