News & Events

May 16, 2012

Worldwide Recognition of hae day :-) Unites and Empowers the Global Hereditary Angioedema Community

National Patient Advocacy Organizations Support People Living with Rare Swelling Disorder in First Global HAE Awareness Day -

COPENHAGEN –May 16, 2012—Today, advocacy organizations in 36 countries around the world have united to improve awareness of hereditary angioedema (HAE), a rare and potentially life-threatening swelling disorder, by supporting hae day :-) in their communities. Initiated by the HAEi – International Patient Organization for C1-Inhibitor Deficiencies – hae day :-) is the first global awareness day to raise awareness of HAE among the general public and medical community. The goal is to create an environment in which there is better care, earlier and more accurate diagnosis and knowledge that HAE patients can lead a healthy life.

For the past four months, supporters have been organizing education and awareness activities all over the world – from Frankfurt, Germany to Honolulu, USA via Veracruz, Mexico. Events include a presentation about HAE, a raffle, a Walk-a-Thon, a fundraising card game and a mass photo shoot. Through its website, haeday.org, more than 400 people from nearly every continent shared a virtual smile in support of HAE awareness. The first hae day :-) culminates tomorrow when people with HAE, care givers, health care professionals and industry representatives attend the 2012 HAE Global Conference in Copenhagen, the first truly global meeting of the HAE community.

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May 16, 2012

Dyax Corp. Reaffirms Commitment to Supporting Patients with Hereditary Angioedema on Inaugural HAE Day

BURLINGTON, Mass.–(BUSINESS WIRE)– As awareness activities take place today across the globe in recognition of Hereditary Angioedema (HAE) Day —— Dyax Corp. (NASDAQ: DYAX) has announced a donation of $25,000 to the United States Hereditary Angioedema Association (HAEA) — the largest HAE patient group in the world. This donation is one of several activities undertaken by the company in honor of HAE Day, including efforts aimed at educating healthcare providers, engaging patients, and leveraging the passion of Dyax employees to support the HAE patient community. Dyax is the manufacturer of KALBITOR® (ecallantide) for the treatment of acute attacks of HAE in patients 16 years of age and older.

“Dyax employees gather at their Burlington, MA corporate headquarters to take part in the “Cover the World with Smiles” campaign. The initiative asks those from around the world to take a picture of their ‘smile’, the primary symbol of Hereditary Angioedema Awareness Day, to demonstrate that people everywhere are banding together to raise awareness of the condition.” (Photo: Business Wire)

“On the first ever HAE awareness day, Dyax is proud to bring attention to the individual journeys of the thousands of people living with HAE worldwide,” said Gustav Christensen, President and CEO of Dyax. “The activities leading up to this day represent a common goal among patients, healthcare providers, advocacy groups and industry — to support a healthy and full life for those living with this frequently overlooked condition.”

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May 15, 2012

Shire Facebook Page Increases Awareness of Hereditary Angioedema (HAE) in Support of First HAE Awareness Day May 16th

For Every Page “Like” Company Will Donate $1 to the U.S. Hereditary Angioedema Association

LEXINGTON, Mass., May 14, 2012 /PRNewswire/ — Shire plc (LSE: SHP, NASDAQ: SHPGY), the global specialty biopharmaceutical company, today announced its support of the first global hereditary angioedema (HAE) awareness day, being held on May 16th, with a new Facebook page “Shire Supports HAE Awareness Day.” Developed to help raise awareness of HAE, for every person who likes the Facebook page by May 16th, Shire will donate $1 to the U.S. Hereditary Angioedema Association (HAEA) up to $7,500. Visitors can learn more about HAE or share comments by clicking on the page’s “Join the Discussion!” tab where new facts about this rare condition are posted each day.

“Shire is dedicated to enabling people with life-altering conditions like HAE to lead better lives. This means not only providing much needed treatments for rare diseases, but also supporting awareness and education initiatives like HAE Awareness Day,” said Hugh Cole, Global HAE Franchise Lead, Shire HGT. “I want to thank the 1,600 people who have already liked our Facebook page, and I encourage more people to visit the site and join in our effort. Liking the page is a fast and effective way to lend your support to HAE Awareness Day and the U.S. HAEA.”

HAE Awareness Day was initiated by the HAEi, the International Patient Organization for C1 Inhibitor Deficiency, along with support from its National Member Organizations including the U.S. HAEA. It is a global initiative to raise awareness of HAE among the general public and medical community with the aim of providing patients with better care, earlier and more accurate diagnosis.

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May 12, 2012

Dyax Corp. Launches Hereditary Angioedema (HAE) Attack Tracker™, a Free iPhone Application for HAE Patients

BURLINGTON, Mass.–(BUSINESS WIRE)– Dyax Corp. (NASDAQ: DYAX) today announced the launch of a free smartphone application for the iPhone — HAE Attack Tracker™. This application allows HAE patients to keep detailed records of their disease related information, including emergency and physician contacts as well as individual attack data.

“Recording and tracking triggers and symptoms of HAE attacks can be an important tool in managing this disease,” said Chief Medical Officer Dr. Burt Adelman of Dyax. “Understanding the frequency and severity of these attacks can be of real value to both patients and their treating physicians.”

Dyax is fully committed to delivering outstanding services and support to meet the needs of HAE patients. Developed by a team of patient education specialists at Dyax, along with input from HAE patients, the HAE Attack Tracker is the first and only iPhone application designed specifically for HAE patients.

“Dyax is strongly committed to the HAE community and bringing awareness to this rare and often misdiagnosed disease. We continue to find new ways to bring resources to this community taking into account patient and physician feedback,” said Gustav Christensen, President and Chief Executive Officer of Dyax. “The HAE Attack Tracker iPhone application provides a reference for patients and physicians, allowing them to monitor their HAE attacks and track a number of metrics that could help in the management of their condition.”

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May 04, 2012

CSL Behring Initiates Study of Subcutaneous Administration of C1-esterase Inhibitor in Patients with Hereditary Angioedema

KING OF PRUSSIA, Pa. and MARBURG, Germany, May 3, 2012 /PRNewswire/ — CSL Behring announced today that it has initiated an international phase I/II study of a volume-reduced, subcutaneous formulation of C1-esterase inhibitor (C1-INH) concentrate in patients with hereditary angioedema (HAE). Part of the COMPACT (Clinical Studies for Optimal Management in Preventing Angioedema with Low-Volume Subcutaneous C1-inhibitor Replacement Therapy) program, the study will evaluate the pharmacokinetics, pharmacodynamics and safety of various doses of this presentation of C1-INH.

“We’re enormously pleased that a range of therapy options is now available to treat HAE,” said Bruce Zuraw, MD, Professor of Medicine at the University of California, San Diego, USA, and Chairman of the Steering Committee for the COMPACT program. “Yet, we know that a significant number of patients would prefer a preventive therapy that does not require intravenous infusions and that might offer fewer side effects than currently available treatments. We are confident this study will guide us in the development of this novel method of using C1-esterase inhibitor replacement for the routine prevention of HAE attacks.”

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