In brief

  • Name for organization: HAE Switzerland
  • 72 members at 1 Jan 2021
  • Name of approved HAE treatments:
    • Berinert P
    • Berinert SC
    • Cinryze
    • Firazyr
    • Takhzyro
    • Tranexamic acid: Cyklokapron

Fun or interesting things about Switzerland

1. 8 HAE centres.
2. Very good HAE experts.
3. Various clinical studies have been carried out.

What positive changes have happened for people with HAE, in your country, from 2012 to now?

The positive changes that have taken place for people with HAE in Switzerland since 2012 are:

  1. Annual patient meeting with HAE expert lectures.
  2. Activities for HAE Day.
  3. Annual HAE newsletter.
  4. The number of members of HAE Switzerland has increased by 15%.

What is the biggest achievement for people with HAE, in your country, from 2012 to now?

The greatest success for people with HAE in Switzerland from 2012 until today are:

  1. Approval of 3 new, very effective HAE drugs for adults and children (a total of 6 HAE drugs are available now).
  2. The formation of 5 additional HAE centers (now there are 8 HAE centers in total).
  3. Support for self-administration of HAE drugs by home care companies.

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 particularly proud to organize the following annual events and activities since 2012:

HAE patient meeting

We offer annual HAE patient meetings, where specialist lectures by our HAE experts and an exciting supporting program enable a profitable exchange and exciting contacts with other patients, relatives and doctors.

hae day :-)

On the occasion of the annual hae day :-) on 16 May, we surprise our HAE members and our HAE network with a gift and a corresponding card. In addition, we publish a report on HAE in specialist magazines, newspapers, the Internet or social media to raise awareness of HAE.

HAE newsletter

We use the annual HAE newsletter to inform our HAE members and our HAE network about the latest in connection with HAE.

What support/ resources have you used from HAEi? What has HAEi helped you to achieve?

We are very proud that a delegation of Swiss HAE patients was allowed to take part in the biannual international HAEi global conference and they were able to make many interesting contacts from all over the world and are still in touch today.

Your Next Step… What do you want to achieve for people with HAE in your country by 2030?

We hope that by 2030, those affected by HAE will be able to receive a faster HAE diagnosis and that all Swiss HAE patients will become members of the HAE Switzerland, so we can get new HAE information to all relevant people as quickly as possible.

A message from HAE Switzerland for hae day :-) 2021

The present from HAE Switzerland on the occasion of hae day :-) on 16 May 2021 will be a heart from which lucky clover will grow. The message of happiness grows in real four-leaf lucky clover, very quickly. This present should bring luck to our HAE members and our HAE network and bring a lot of joy into everyday life. Especially in this exceptional Coronavirus situation, this gift should bring a happy change.

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