NEWS
Turning an HAE Walk Into a Pilgrimage
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 [...]
Phase 3 trial meets primary endpoint
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 :-)
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 [...]
HAEi Global Access Program provides life-saving medication to South African HAE patients
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 [...]
BioCryst reports significant progress
“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 Mediterranean
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 [...]
News from Gulf Region and Middle East
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 [...]
News from Central America and the Caribbean
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 [...]
News from Central & Eastern Europe
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 [...]
News from South Eastern Europe
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 [...]
News from Mexico and South America
From Fernanda de Oliveira Martins, Regional Patient Advocate, Mexico and South America GENERAL Fernanda is presently working on the agenda for a regional meeting that is to take place 27-28 April 2019 in Bogotá, Colombia. ECUADOR The HAE [...]
News from Asia Pacific
From Fiona Wardman, Regional Patient Advocate, Asia Pacific TAIWAN Plans are being made for HAEi to meet with a Taiwanese doctor and his HAE patients in May 2019. This will be the first time a meeting [...]
“Global Perspectives” #1/2019 out now
Dear HAE friends, Welcome to the first 2019 issue of the HAEi magazine Global Perspectives. This time you will, among many other items, find information on: HAEi fulfills the General Assembly mandate HAEi now has [...]
The Value of Prophylactic Therapy
A study sponsored by the US HAEA and HAEi assess the value of the new subcutaneous prophylaxis therapies to on-demand only treatment. The results of the study were presented as a poster at the annual [...]
Seven in Ten!
By William R. Lumry, M.D., Allergy Immunology Specialist, Clinical Professor of Internal Medicine, University of Texas Southwestern Medical School. Seven safe and effective treatments for treatment and prevention of HAE attacks have been approved and are [...]
HAEi brings hope to India
By Fiona Wardman, HAEi Chief Regional Patient Advocate Early March 2019 patients, their families, physicians, industry and other rare disease experts along with HAEi came together for the first HAE meeting in India. For [...]
News from Sub-Sahara Africa
From Patricia Karani, Regional Patient Advocate, Sub-Sahara Africa SOUTH AFRICA The first patient meeting was held 14 March 2019 in Cape Town. In attendance were doctors and patients who learned more on HAE and how best [...]
On the way towards a once-daily oral HAE therapy
In its financial results for the full year ended 31 December 2018 the BioCryst Pharmaceuticals, Inc. President and CEO Jon Stonehouse said: “In a year with many transformative milestones for BioCryst, it has been exciting to see [...]
Potentially ideal profile for oral on-demand treatment of HAE
In conjunction with the American Academy of Allergy, Asthma & Immunology (AAAAI) Annual Meeting 2019 in San Francisco, CA. KalVista Pharmaceuticals, Inc. CEO Andrew Crockett said: “We are pleased to provide additional data on KVD900, showcasing [...]
Results Confirm Rapid Onset of Action, Sustained Activity and Robust Dose Response
BioCryst Pharmaceuticals, Inc. reports additional topline data from the Phase 2 ZENITH-1 trial, including new data from the 250 mg and 500 mg dose cohorts. Data from the now complete trial confirm previously reported results [...]
Attune Advances Medication for Treatment of HAE
Attune Pharmaceuticals, Inc. announces the completion of a $23 million Series B financing with the proceeds to be used to advance a pipeline including the ongoing clinical development of ATN-249, a novel orally-administered plasma kallikrein [...]
Serving an important role in the management of HAE
Following the presentation of two abstracts at the Western Society of Allergy, Asthma and Immunology (WSAAI) in Maui, Hawaii, USA, the Pharming Group N.V. COO Bruno Giannetti (MD, PhD) said: “This real-world evidence demonstrates that Ruconest continues [...]
Positive Phase 1 Results for Oral Plasma Kallikrein Inhibitor
Attune Pharmaceuticals announces the positive results from the first in human studies evaluating ATN-249, a novel orally administered plasma kallikrein inhibitor for the treatment of HAE. The data were presented by Ira Kalfus, M.D., chief [...]
HAEi Central Eastern Europe Conference and Workshop 2018
The HAEi Central Eastern European region is a massive one consisting of 12 countries with a population close to 300 million people – and with only around 15 per cent of all HAE patients [...]
HAEi South Eastern Europe Workshop 2018
By Natasa Angjeleska, HAEi Regional Patient Advocate South Eastern Europe Before being nominated as HAEi Regional Patient Advocate for the South Eastern Europe countries (SEE), I established communications through my colleagues from HAE Macedonia with [...]
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Upcoming events
Apr 1, 2019 - May 31, 2019
HAE Global Walk 2019
May 23, 2019 - May 26, 2019
11th C1-INH Deficiency Workshop
United States
Jun 15, 2019
HAE IN-MOTION 5K walk/run
Jun 19, 2019 - Jun 20, 2019
Scientific and Practical International HAE Conference
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HAE related topics that might interest you
Global Access Program
Helping to change the lives of patients with hereditary angioedema (HAE) with a medication access program
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Constantly strive to improve the situation for HAE friends all over the world – no matter how they are organized
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