What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive changes that have happened for people with HAE in Montenegro since 2012 are establishing and starting to work as HAE Montenegro in 2017. We found a doctor interested and knowledgeable in HAE and he assists patients in diagnoses, receiving therapies and monitoring the disease.
2016. We received the first (and to date only) treatment therapy for HAE attacks, Firazyr in Montenegro. HAE Montenegro has made contacts and has good cooperation with HAE organisations in our region. They provide us with wholehearted help and support in achieving our goals.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The biggest achievement for people with HAE, in our country, from 2012 to now is building connections among patients in our country and knowing that we aren’t alone, as well as joining HAEi.
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?
We are most proud to have created a network among patients with HAE in our country, and can support each other and regularly exchange information. We have organized several HAE events and had several TV appearances. In 2018, we organized a streaming of the documentary “Special blood” as part of a well-known film festival on human rights „Ubrzaj“ (“Accelerate”). In 2019, we celebrated hae day :-) by releasing 16 purple balloons in order to raise awareness about this disease and show support for patients. The message we sent was: with or without HAE, only the sky’s the limit. We established good cooperation with the national organization for rare diseases in Montenegro. From 2018 we have participated in the annual HAE Regional Workshop in Macedonia. There we had the opportunity to exchange experience with other organizations as well as to be informed about the latest developments in treatment and therapies for HAE.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
We’ve had HAEi’s help in creating and hosting our website and been able to participate in HAE Regional Workshops. HAEi has played a major role in creating links with other organizations and patients around the world. HAEi helped in the design and creation of our first HAE emergency card.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
By 2030 we would like to get several different HAE medications approved for all HAE patients through changes in the legal framework. We would like to work more closely with doctors and medical practitioners to enable better management of people with HAE. We would like to start to work with doctors on development of protocols for treatment of HAE patients, especially children. We would like to create a database of HAE patients in the country and to increase public awareness of HAE.