This input is dated May 2021
In brief
- Name for organization: Romanian Association of Patients with Hereditary Angioedema – HAE Romania
- 63 members at 1 Jan 2021
- Name of approved HAE treatments:
- Berinert
- Ruconest
- Firazyr
- Cinryze
Fun/interesting facts
- Traditions and authenticity: In many regions, people keep the old traditions, using the folk clothes, dances and songs from our past.
- Geography: Romania’s geography includes The Black Sea with Danube Delta, beautiful hills, and the Carpathian Mountains. Secular forests are home to wildlife unique to Europe.
- People’s hospitality, we will do everything we can so our guests feel good.
What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive change that happened for people with HAE in Romania is that we have been able to obtain authorization for 4 drugs of vital importance to our patients: Berinert, Ruconest, Firazyr and Cinryze.
The name of our organization is: Association of Patients with Hereditary Angioedema in Romania (AEE. RO) and was founded in 2012. Since its inception, the purpose of the association has been to fight for respect of the rights of patients with hereditary angioedema in Romania and to obtain appropriate treatments, thus giving all patients the right to live life as close to normal as possible.
As a result, in close cooperation with the AEE (HAE) Pilot Center in Targu Mures, led by Dr. Dumitru Moldovan and later with the AEE (HAE) Expertise Center currently led by Dr. Noemi Bara, and through intense and sustained work, there are now prescribing doctors in every county where there are patients with hereditary angioedema. This makes patients’ access to treatments and medications is much better, bringing much comfort and relief to patients.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
One of the biggest achievements for people with HAE in Romania is the approval of Firazyr and its availability to all patients with HAE for home treatment. The cost of the drug is fully covered by the Romanian state and each patient has now the opportunity to have it at home and to self-administer as soon as possible when they experience an HAE attack. The availability of this drug not only brings relief to patients with pain that can be unbearable, but also saves the lives of patients experiencing a laryngeal attack.
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?
Our focus was to increase the awareness of this disease. So, we organized meetings and presentations for doctors, to educate them about the characteristics of the disease. Increasing awareness among physicians can lead to a decrease in the number of misdiagnosis cases. By publishing articles in the written media and through interviews and television shows, both locally and nationally, the aim was to raise public awareness of this disease, so that as many people as possible, patients, have the chance for a correct diagnosis and appropriate treatment.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
The cooperation with patient associations from other countries and with the international organization HAEi, provides real support to our national organization, through the exchange of information, knowledge and the feeling of belonging to a global community, with the same goals and objectives.
Participation in international conferences organized by HAEi gives us the opportunity to come into direct contact with experts in the field, with research companies and those producing drugs, thus having the opportunity to align our local efforts with global ones.
The existence of the HAEi website and their hosting the websites of the national associations under the same umbrella, gives all patients the opportunity to access quality information, obtained from experts and presented to the general public, in real time.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
Given that this disease is still underdiagnosed, our future efforts will continue in the direction of raising awareness of this disease, both with doctors and with the general public. We will continue to advocate for the adoption of legislation recognizing HAE as a disabling disease, so that patients can benefit from these legal rights. Unfortunately, there are also children who are living with this disease. That’s why one of our future goals will be to start psychological counselling programs for them.
