Novel treatments for HAE

August 13, 2019|HAEi News|

At the presentation of the financial results for the quarter ended 30 June 2019, Kenneth T. Mills, President and CEO of the clinical-stage biotechnology company REGENXBIO Inc., said: "We recently announced the expansion of our pipeline [...]

New drug application on-track

August 13, 2019|HAEi News|

BioCryst Pharmaceuticals, Inc. has announced the financial results for the second quarter ended 30 June 2019 and provided a corporate update. “We have just returned from the 2019 HAEA National Patient Summit with more than 1,000 [...]

News from Hungary

July 16, 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 title of the event, now [...]

News from South Africa

July 16, 2019|South Africa|

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 patients [...]

News from Denmark, Norway and Sweden

July 16, 2019|Denmark, Norway, Sweden|

Leading HAE experts from Scandinavia will be speaking at the third HAE Scandinavia conference taking place in Oslo, Norway 8-10 November 2019. Among the speakers are: Christian Jervelund from Copenhagen Economics – speaking on health and socioeconomic topics [...]

News from Israel

July 16, 2019|Israel|

For hae day :-) 2019 HAE Israel had a patient gathering with the medical companies and the doctors from the major hospitals. The theme was HAE the past, present and future – and there were a few lectures [...]

News from North Macedonia

July 16, 2019|North Macedonia|

From Natasa Angjeleska, HAE Macedonia: HAE Macedonia marked hae day :-) 2019 with a puppet show based on a story written by me about the  “Rare boy and the talkative balloon”. The story explains the sorrow of a [...]

News from Brazil

July 16, 2019|Brazil|

The first half of 2019 has been pretty busy for HAE Brazil (ABRANGHE). The calendar of the three months includes the signing of an access program in Sao Paulo, meetings on rare diseases in Rio de Janeiro and [...]

News from Saudi Arabia

July 16, 2019|Saudi Arabia|

One more HAE knowledgeable doctor has been located in the Kingdom of Saudi Arabia. He is Dr Farrukh R. Sheikh, the Program Director for Allergy & Immunology at the King Faisal Specialist Hospital and Research Centre in Riyadh [...]

News from Uruguay

July 16, 2019|Uruguay|

At this point, there are very few registered HAE patients in Uruguay and as they are scattered throughout the country – and due to high travel expenses to come to the capital – there is not much activity. [...]

News from Russia

July 16, 2019|Russia|

From Chairman Elena Bezbozhnaya, HAE Russia (SPHA OPHAE): On hae day :-) 2019, the Interregional Public Organization “Society of Patients with HAE” (SPHA OPHAE) celebrated its third anniversary. Today the organization includes more than 150 people from 40 [...]

News from Spain

July 16, 2019|Spain|

From President Sarah Smith, HAE Spain (AEDAF): HAEi/AEDAF Camino Walk 2019: AEDAF has again this year joined up with HAEi to organize the 3rd Camino Walk on the Camino de Santiago in Galicia (northwest Spain), to commemorate hae day [...]

News from Canada

July 16, 2019|Canada|

From Daphne Dumbrille, HAE Canada Volunteer Coordinator: HAE Canada has had a busy spring. Things kicked off with the HAE Canada Director at Large, Anne Rowe and Ontario Regional Director, Tina McGrath, attending the Network of Rare Blood Disorder [...]

News from Belgium

July 16, 2019|Belgium|

For hae day :-) 2019 in Belgium HAE International Vice President Michal Rutkowski presented the importance of patients’ advocacy at a patients’ meeting in Brussels, Belgium. The event – gathering 35 attendees – was organized by the Hematology Center [...]

News from the United Kingdom

July 16, 2019|United Kingdom|

From CEO Laura Szutowicz and Executive Officer Rachel Annals, HAE UK: We spend a lot of time sifting through the Facebook posts seeing that people are still tolerating increases in their attack rate and saying ‘oh, that is [...]

News from Kenya

July 16, 2019|Kenya|

From President Patricia Karani, HAE Kenya: hae day :-) 2019 in Kenya was a day to raise media awareness amongst the public on our local television networks that are seen countrywide. I was able to feature in specific [...]

News from Panama

July 16, 2019|Panama|

From Regional Patient Advocate Javier Santana: As part of the events of hae day :-) 2019, Dr Olga M. Barrera (second from left) made an exhibition “The Multiple Faces of HAE” at the San Fernando Hospital in Panama [...]

News from South Korea

July 16, 2019|South Korea|

From Chief Regional Patient Advocate Fiona Wardman: A date has been set for the first patient “meet and greet” in Seoul. HAEi has previously met with Korean doctors, the Korean Organization for Rare Diseases (KORD), and industry partners [...]

News from Hong Kong

July 16, 2019|Hong Kong|

From Chief Regional Patient Advocate Fiona Wardman: Now that the date and venue for the first patient meeting in Hong Kong have been finalized, HAE International is very excited to meet with patients, carers, doctors, industry partners [...]

News from Taiwan

July 16, 2019|Taiwan|

From Chief Regional Patient Advocate Fiona Wardman: With the help of the very caring and knowledgeable Dr Shyur in Taipei, HAE International held the first-ever HAE patient meet and greet in Taipei, Taiwan on 19 May 2019. [...]

News from Kazakhstan

July 16, 2019|Kasakhstan|

From Regional Patient Advocate Michal Rutkowski: I plan to participate in the Immunology Conference in Astana on 5-6 October 2019 dedicated to health care professionals, where a separate HAE track will be organized. I work closely with Sergey [...]

News from Georgia

July 16, 2019|Georgia|

From Regional Patient Advocate Michal Rutkowski: I have established contact with Professor Maia Gotua from the Allergy & Immunology Center in Tbilisi, who has been diagnosing HAE patients. There have been numerous patients already diagnosed in Georgia, however [...]

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 [...]

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