What positive changes have happened for people with HAE, in your country, from 2012 to now?
Our association has existed for about twenty years We represent the HAE but also the acquired form
The positive changes are making the condition HAE known to doctors and hospitals.
Especially Dr. Marcel Levi was a driving force behind this setup.
He has ensured that the condition HAE is known in all university hospitals.
Through extensive consultation with health insurers, but also with the pharmacy and the Ministry of Public Health, we have achieved that all medicines that are required are available and are also reimbursed by the insurers, medicines that are not yet in the health care package, in consultation with the ministry. pharmacy and university hospitals were nevertheless made available free of charge.
This requires a lot of consultation with and trust in each other
We are now in the process of making our condition more known to the general practitioners and emergency departments of the regional hospitals.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The positive change was to start our association twenty years ago when it was clear that this condition was more widespread than expected.
There were usually wrong diagnoses resulting in wrong medication and unnecessary operations there was a lot of misunderstanding among the doctors when the HAEi was started, we joined because this gave us more eloquence among the doctors and much more became known
Where possible, self-medication can and may be given, if this is not possible there is a fine-grained organization of home help to have this medication take place at home, in case of emergency these nurses are present at the patient within 15 minute.
What is the resource, event or activity that you are most proud of organizing for people with HAE in your country, from 2012 to now?
Ideas for the celebration of HAE day we have had to cancel because we are in a Lockdown due to the Covid-19 virus we do give attention on our forums such as newsletter and FaceBook
In collaboration with the VU-AMC Amsterdam we have developed a website especially for young people here they can communicate with each other but also make direct contact with their specialized nurse and doctors. In addition, we have developed a special letter together with the Dutch GP society. All our members can request this from us for free. Here you will find information for general practitioners and A&E from mainly regional hospitals, what ailment is and what should be given for medication in an emergency and where they can get information, for example from the expertise center.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
We already participate in conferences as much as possible, it is easier for us to have our own website. We are active in all necessary consultation bodies and umbrella organizations. If the Covid -19 virus is under control, we will also organize living room meetings for member contact days
Here the HAEi is not forgotten, we always make known to our members what the HAEi is and does and indicate that a lot of information can also be obtained here.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
We are working on the fame of HAE but also AAE.
We hope that the disorders are known to all GPs and SHE posts and that a definitive solution will be found, we mainly think of genetic repairs. These are still in their infancy, but the reports are encouraging.
In addition, we want to restore physical contact with our members as soon as possible.
And continue to argue that the HAEi will also represent the acquired forms.