What positive changes have happened for people with HAE, in your country, from 2012 to now?
The first initiatives to bring diagnosed HAE patients together, to share experiences and needs, date back to 1996. After our first gathering, which was attended by patients from different parts of the country, we were made aware of the need to advocate for our interests. The international HAE day reaffirmed our commitment to become more visible and articulate our needs. Modern medicines have been available to HAE patients in Hungary since the 2000s. HAE days reinforced our view that we are right to demand access to these medicines, despite their relatively high cost. The cost of medication can have a strong influence and cause unjustified modesty in some patients. In these patients, the cost had the effect of undermining their belief that they were entitled to or should have access to these medications. The international representation of these rights via HAEi and HAE day supports us in articulating these rights for patients in Hungary as well.
Our patients have always been ready to participate in new medication trials and through the Angioedema Center clinics they have contributed to the approval of new medicines.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
For more than twenty years we have been fortunate to have modern medicines to treat HAE in Hungary, this and the international presence and representation of the needs of HAE patients has really helped us to improve quality of life for people with HAE.
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?
There are several annual events that are the hallmark of the collaboration between our members and the National Angioedema Centre.
The most traditional and important event in our Association’s life is the so called HAE-KLUB, which provides a friendly forum to exchange experiences among families, meet co-workers of the National Angioedema Centre and the supporting Laboratories. This is the event where our members are updated on the ongoing medical trials and hear about the actual status of the medicine supply. We hold the General Assembly of our HAE patient Association at the same time. Each year we participate in rare disease day events in Hungary and represent the community of the HAE patents. We are a member organization of HUFERDIS – RIROSZ, the Hungarian Federation of People with Rare and Congenital Diseases Network. Alongside the other member organizations of this group, we support its activity in Hungary. This year on Rare Disease Day, we are ready to distribute updated, informative leaflets about HAE, as well as videos and explanations of HAE and to talk about HAE with for those who are interested. More and more medical students attend the event and now quite a few of them are knowledgeable about HAE – thanks to the educational activity of the head of the National Angioedema Centre.
A very important event for us is our training program for the self-administration of modern medicines. On these occasions our members can – under a physician’s supervision, practice the iv self-administration of the shots.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
We regularly use the materials and newsletters of HAEi.
We inform and encourage our members to use the HAE COMPANION app and we want to finalize our application for the membership database, HAEI CONNECT.
We participate in regional (Central Eastern European and Benelux) activities.
The work of HAEi strengthens our conviction of the importance of the work of our association and provides examples and ideas for possible development and expansion.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
We would like to achieve a status where children are able to self-administer medication from the age of 7-10. With the availability of modern medicines, we want each and every HAE patient to have the highest possible independence from the disease. We would also like all potential HAE patients to get an accurate diagnosis promptly (within 1 year after the first symptoms).