- Name for organization: HAE Italy
- About 800 members at 1 Jan 2021
- Name of approved HAE treatments:
Fun or interesting things about Italy
- Spaghetti, pizza and mandolin
- Heritage culture
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 Italy are: the development of a patient registry, the collaboration with ITACA (a network of HAE physician specialists), the approval of new medication by the health care system.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The biggest achievement for people with HAE in Italy are: participating in self-administration classes, getting the right medications, getting the right support from physicians and prophylaxis medication at home.
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 of organizing self-administration courses, the first patient registry, a documentary on HAE, new website, social media engagement with people, and providing support to those in difficulty including those from abroad.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
We have been supported/provided with: Global Conferences, contact with our Regional Patient Advocate (RPA).
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
We still have goals we want to achieve; increasing self-administration classes, increasing the knowledge of HAE in the country, speeding up and so shortening times to diagnosis, equality of medicines access throughout Italy, increased knowledge of other forms of rare angioedema (i.e idiopathic).
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