News2019-07-09T13:26:36+02:00

NEWS

News from Belarus

July 16, 2019|Belarus|

From Regional Patient Advocate Michal Rutkowski: The HAE Regional Workshop organized by HAE Poland in the city of Bialystok, Poland became an international project with the attendance of patients from Belarus. Similarity of the language and mostly mutual [...]

News from Poland

July 16, 2019|Poland|

From President Michal Rutkowski, HAE Poland (Swelling Beautifully Association): The period of April and May 2019 has been extremely busy for the Polish HAE Patients’ Organization with providing educational projects for HAE national community and attending [...]

News from Tunisia

July 16, 2019|Tunisia|

From Regional Patient Advocate Maria Ferron: Dr Habid Ghedira has agreed with a patient (and a possible patient lead in the country) and their family to have a medical appointment to provide them with an official diagnose on [...]

News from Algeria

July 16, 2019|Algeria|

From Regional Patient Advocate Maria Ferron: On the celebration of hae day :-) 2019, the Algerian Society of Allergology and Clinical Immunology (organized by Doctor Habib Douagui) organized at Beni-Messous University Hospital a day of sensitization and information for [...]

News from Rwanda

July 16, 2019|Rwanda|

From Regional Patient Advocate Patricia Karani: Together with Dr Edgar Kalimba - the new HAE knowledgeable physician in Rwanda - I organized the 2nd HAE Doctors Symposium at Kigali, Rwanda to raise more awareness amongst African doctors. Hosted [...]

News from Senegal

July 16, 2019|Senegal|

From Regional Patient Advocate Patricia Karani: I got a chance to raise awareness at the 6th African Society of Immunodeficiencies (ASID) Congress that was held in Dakar, Senegal in April 2019. At the event Dr Priya Bowry from [...]

News from Morocco

July 16, 2019|Morocco|

From Regional Patient Advocate Maria Ferron: The national organization AMMAO is starting to work on their new website to be hosted under the HAE International umbrella. Also, HAE International is supporting AMMAO with a letter to be addressed to [...]

News from Albania

July 16, 2019|Albania|

From Regional Patient Advocate Natasa Angjeleska: In April 2019, I visited Tirana, Albania and met with the HAE patient group – a great reuniting with patients. We discussed the challenges they face due to restricted access to [...]

Life-saving medication to South African HAE patients

July 8, 2019|HAEi News|

A ‘one-of-a-kind’ medication access program from HAE International is now successfully delivering potentially life-saving medication to HAE-patients in South Africa. “As no modern medications have been commercially available in South Africa until now, HAE [...]

11th C1-INH Deficiency & Angioedema Workshop

July 8, 2019|Hungary|

Over four days in the last part of May 2019, an international scientific conference on C1-INH deficiency was held for the 11th time in Budapest, Hungary. This year, another word was added to the [...]

“Global Perspectives” #2/2019 out now

July 6, 2019|HAEi News, Newsletters|

Dear HAE friends, Welcome to the second 2019 issue of the HAEi magazine Global Perspectives. This time you will, among many other items, find information on: News from the HAEi Regional Patient Advocates Life-saving medication [...]

Phase 3 trial meets primary endpoint

May 21, 2019|HAEi News|

The randomized (n=121), double-blind, placebo-controlled, Phase 3 APeX-2 trial of once-daily, oral BCX7353 for the prevention of HAE attacks has achieved its primary endpoint for both dose levels (110 mg and 150 mg), with the [...]

Pharming celebrates hae day :-)

May 16, 2019|HAEi News|

On 16 May each year, HAE patient organisations from around the world, led by the HAEi, the international umbrella organisation for the world’s HAE patient groups, come together to support awareness of HAE. hae day [...]

BioCryst reports significant progress

May 8, 2019|HAEi News|

“In a year with many milestones across our multiple advancing programs of oral medicines for rare diseases, BioCryst Pharmaceuticals, Inc. has achieved significant progress in the first quarter and we look forward to reporting data [...]

News from Puerto Rico

April 9, 2019|Puerto Rico|

In the second half of March, HAEA Puerto Rico held its Patient Summit 2019 in San Juan. The main speakers were Professor Sandra Christiansen from the US HAEA Angioedema Center at UCSD, Director Bruce Zuraw [...]

News from Libia

April 9, 2019|Libya|

With the addition of Libya HAEi now have a point of contact in 74 countries around the globe. The person in question in Libya is Ahmed Ali Abudahair who is located in Tripoli. He can [...]

News from Japan

April 9, 2019|Japan|

From President Beverley Yamamoto, HAE Japan (HAEJ): Icatibant has now been approved for acute attack in Japan and now for the first time patients have access to a therapy that can self-inject. It is making [...]

News from Guatemala

April 9, 2019|Guatemala|

HAEi Regional Patient Advocate Javier Santana has helped country no. 72 to join the global HAE family. HAEi welcomes Guatemala represented by Mrs Samantha Alvarado who can be reached at samata.saga@gmail.com.

News from Kosovo

April 9, 2019|Kosovo|

Two HAE knowledgeable physicians have been added in Pristina: One at Children’s Clinic (Pediatrijska Klinika) and the other at KBC-Pediatria – Nephrology department. Contact information can be found at https://haei.org/location/physician-pristina-1-kosovo and https://haei.org/location/physician-pristina-2-kosovo.

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Sep 27, 2019 - Sep 29, 2019
HAEi Regional Workshop South Eastern Europe

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Oct 5, 2019
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Oct 12, 2019 - Oct 13, 2019
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Oct 18, 2019 - Oct 20, 2019
HAEi Regional Workshop Central Eastern Europe

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