HAEi News

Turning an HAE Walk Into a Pilgrimage

2019-05-22T10:05:42+00:00May 21, 2019|HAEi News|

Many of us show support by doing a charity walk or running a 5K - events that usually take the better part of a morning. But is there a cause that you would walk three days for? For 50 people who will gather in Spain this week, the answer is yes and the cause is [...]

Phase 3 trial meets primary endpoint

2019-05-22T10:06:28+00:00May 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 150 mg dose reducing the attack rate in HAE patients by 44 percent (p<0.001) compared to placebo. Fifty percent of [...]

Pharming celebrates hae day :-)

2019-05-22T10:07:50+00:00May 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 :-) aims to raise global awareness to ensure each and every patient receives faster diagnosis and the care they need [...]

HAEi Global Access Program provides life-saving medication to South African HAE patients

2019-05-22T10:13:47+00:00May 16, 2019|HAEi News|

A ‘one-of-a-kind’ medication access program from HAE International (HAEi) is now successfully delivering potentially life-saving medication to patients in South Africa, who suffer from the rare genetic condition hereditary angioedema (HAE).HAE causes severe and unpredictable swelling (edema) in different areas of the body including the hands, feet, and face. Patients experience bouts of excruciating abdominal [...]

BioCryst reports significant progress

2019-05-15T11:32:31+00:00May 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 from our APeX-2 trial in the second quarter and filing a new drug application by the end of the year,” [...]

News from Mediterranean

2019-05-15T14:19:22+00:00April 7, 2019|Algeria, Cyprus, France, Greece, HAEi News, Israel, Italy, Morocco, Portugal, Spain|

From Maria Ferron, regional patient advocate, Mediterranean MOROCCO 19 January 2019 AMMAO (HAE Morocco) held the first meeting as an official association with 115 attendees. Maria attended on behalf of HAEi introducing the association, projects, and activities to the Moroccan community. Presently Maria is supporting AMMAO on hosting their website under the HAEi umbrella. PORTUGAL Maria is [...]

News from Gulf Region and Middle East

2019-05-15T14:20:32+00:00April 7, 2019|Algeria, Egypt, HAEi News, Iran, Kuwait, Lebanon, Libya, Morocco, Qatar, United Arab Emirates|

From Rashad Matraji, regional patient advocate, Gulf Region and Middle East LEBANON  Together with a Lebanese doctor Rashad has been working on a meeting leading up to the WAO Inter-national Scientific Conference in Beirut in April 2019. KUWAIT, QATAR In both countries Rashad has helped in identifying patients who have agreed to become the national HAE [...]

News from Central America and the Caribbean

2019-05-15T14:20:54+00:00April 7, 2019|Central America and Caribbean, Costa Rica, Cuba, El Salvador, Guatemala, HAEi News, Panama, Puerto Rico|

From Javier Santana, regional patient advocate, Central America and the Caribbean PANAMÁ Javier is planning a trip to Panama to meet with the patient group and offer a workshop on how to create awareness events, media interviewing tips, and addressing government issues. COSTA RICA In February 2019 HAE Costa Rica held the first conference on HAE in [...]

News from Central & Eastern Europe

2019-05-15T14:22:48+00:00April 7, 2019|Belarus, Central Asia, Czech Republic, HAEi News, Hungary, Kasakhstan, Poland, Russia, Slovakia, Ukraine|

From Michal Rutkowski, regional patient advocate, Central & Eastern Europe LITHUANIA Michal is in contact with a doctor from Vilnius who has shown interest in joining the HAE Global Registry project. The doctor sees around 10 HAE patients. RUSSIA Michal has been invited to attend the “Scientific and Practical International HAE Conference” that HAE Russia will [...]

News from South Eastern Europe

2019-05-15T16:48:53+00:00April 7, 2019|Albania, Bosnia-Herzegovina, Bulgaria, Croatia, Europe, HAEi News, Montenegro, North Macedonia, Romania, Serbia, Slovenia, Turkey|

From Natasa Angjeleska, regional patient advocate, South Eastern Europe SERBIA In February 2019 Natasa participated in the annual patient meeting of HAE Serbia delivering a presentation entitled ”The incredible power of advocacy”. The program also included addresses from two physicians about the therapeutic options for HAE and patients heard about the bureaucratic procedures regarding receiving medication. ALBANIA [...]