News & Events

News & Events 2017-05-31T19:25:08+00:00

Keep yourself updated with HAEi news and events

HAEi News Archive

18Sep, 2017

Recommendations for Prophylaxis and Treatment of HAE Attacks

The Food and Drug Administration (FDA) has recently received reports from patients, physicians, and specialty pharmacies that they have been [...]

17Sep, 2017

Diplomat acquires Focus Rx

Diplomat Pharmacy, Inc. has completed its acquisition of Focus Rx Pharmacy Services Inc., a customer-focused healthcare partner that provides home [...]

16Sep, 2017

Portfolio of Oral Plasma Kallikrein Inhibitors Continues to Advance

  From the KalVista Pharmaceuticals, Inc. operational and financial results for the fiscal first quarter ended July 31, 2017: “We [...]

11Sep, 2017

Significant reduction of attack rate

Shire plc announces positive topline Phase 3 results for the Sahara study, a global, multi-center, randomized, double-blind, placebo-controlled, partial crossover [...]

11Sep, 2017

Conclusion of FDA End-of-Phase 2 interactions on Ruconest

Pharming Group N.V. has concluded its End-of-Phase 2 interactions with the U.S. Food and Drug Administration (FDA). As part of [...]

7Sep, 2017

Positive Results from APeX-1 Phase 2 Trial

BioCryst Pharmaceuticals, Inc. has announced final results from its Phase 2 APeX-1 clinical trial in HAE. APeX-1 was a 3-part [...]

11Aug, 2017

Berinert Approved by Health Canada

Heath Canada - responsible for helping Canadians maintain and improve their health - has approved Berinert (C1 Esterase Inhibitor, Human) [...]

10Aug, 2017

Adverum Reports Second Quarter Financial Results

Adverum Biotechnologies, Inc. has reported financial results for the second quarter ended 30 June 2017 and provided a corporate update. [...]

9Aug, 2017

BioCryst Reports Second Quarter Financial Results

BioCryst Pharmaceuticals, Inc. has announced financial results for the second quarter ended 30 June 2017. Jon P. Stonehouse, President & [...]

3Aug, 2017

BioCryst Announces Initiation of ZENITH-1

BioCryst Pharmaceuticals, Inc. has announced the dosing of the first subject into ZENITH-1, a clinical trial studying up to three [...]

28Jul, 2017

KalVista Pharmaceuticals Provides Operational Update

KalVista Pharmaceuticals, Inc. provides an operational update and released financial results for the fiscal fourth quarter and full year ended [...]

27Jul, 2017

Pharming Reports on Financial Results for the First Half of 2017

Pharming Group N.V. presents its (unaudited) financial report for the six months ended 30 June 2017. CEO Sijmen de Vries [...]

26Jul, 2017

The Lancet publicizes RUCONEST® prophylactic data

The weekly peer-reviewed general medical journal The Lancet has published data from a Phase II, double-blind, placebo-controlled, randomized clinical trial [...]

22Jul, 2017

FDA Orphan-Drug Exclusivity for HAEGARDA

The U.S. Food and Drug Administration (FDA) has granted CSL Behring seven years of orphan-drug exclusivity for HAEGARDA (C1 Esterase [...]

30Jun, 2017

June magazine out now

Download  the HAEi magazine "Global Perspectives" June 2017 here: Global Perspectives - June 2017

27Jun, 2017

Regional Patient Advocate for sub-Sahara Africa

Early 2016 HAEi appointed five Regional Patient Advocates, dividing a large portion of the world between them. As per 1 [...]

23Jun, 2017

FDA approves first subcutaneous C1 Esterase Inhibitor

The U.S. Food and Drug Administration has approved Haegarda, the first C1 Esterase Inhibitor (Human) for subcutaneous (under the skin) [...]

2Jun, 2017

Thousands helped raise HAE awareness step by step

On and around hae day :-) 2017 a group of HAE patients, caregivers, doctors and people from HAE organizations walked [...]

28May, 2017

Positive Results From the Second Interim Analysis

BioCryst Pharmaceuticals, Inc. has announced results from a second interim analysis of its Phase 2 APeX-1 clinical trial in HAE. [...]

23May, 2017

Attune Announces Positive Data from Pre-Clinical Studies

  Attune Pharmaceuticals announces positive results from preclinical safety studies evaluating ATN-249, a novel orally administered plasma kallikrein inhibitor for [...]

19May, 2017

Lanadelumab Reduces HAE Monthly Attack Rate by 87 %

Shire plc announces positive topline Phase 3 results for the HELP study, a global, multi-center, randomized, double-blind placebo-controlled parallel group [...]

16May, 2017

2018 HAE Global Conference will take place in Vienna, Austria

Following the very successful HAE conferences in Copenhagen, Denmark in 2012, Washington D.C., USA in 2014, and Madrid, Spain in [...]

16May, 2017

A global awareness day for a rare life-threatening condition

On May the 16th HAE patient organizations from around the world, led by HAEi come together to support the global [...]

11May, 2017

Adverum Reports First Quarter 2017 Financial Results

Adverum Biotechnologies, Inc. has reported the financial results for the first quarter ended March 31, 2017. “Adverum is well positioned [...]

5May, 2017

BioCryst Reports First Quarter 2017 Financial Results

BioCryst Pharmaceuticals, Inc. has announced the financial results for the first quarter ended March 31, 2017. "We have completed enrollment [...]

2May, 2017

Shire delivers strong Q1 2017 revenue growth

Shire plc has announced the unaudited results for the three months ended March 31, 2017. Flemming Ornskov, Shire CEO, commented: [...]

1May, 2017

Raising awareness step by step on the Camino

30 people – most of them suffering from a rare and potentially fatal disease – will meet mid-May in northern [...]

13Apr, 2017

BioCryst Expands Development to Explore Treatment of Acute HAE Attacks

BioCryst Pharmaceuticals, Inc. plans to explore a new oral liquid formulation of BCX7353 for the treatment of acute attacks in [...]

30Mar, 2017

Global Perspectives – the HAEi magazine #1/2017 is out now

We are excited to inform you that the first edition of "Global Perspectives" in 2017 - the HAEi magazine - is out [...]

25Mar, 2017

Japan Approves Berinert for Short-Term Prophylaxis

As of 24 March 2017, Japan’s Ministry of Health, Labour and Welfare (MHLW) has approved an extended use of Berinert [...]

23Mar, 2017

Pivotal Phase III Data for CSL Behring’s Subcutaneous C1-Esterase Inhibitor

New England Journal of Medicine (NEJM) has published results from the COMPACT study, a pivotal Phase III study evaluating the [...]

22Mar, 2017

Cooperation and networking among health care professionals worldwide

From 7 to 9 March 2017, CSL Behring in Bern, Switzerland hosted the First Intercontinental Immunoglobulin and Hereditary Angioedema Academy. [...]

16Mar, 2017

Cinryze first HAE treatment approved for routine prevention in paediatrics

The European Commission has approved a label extension granting three new indications for Cinryze (C1 inhibitor [human]) from Shire plc, [...]

10Mar, 2017

Financial report 2016 from Pharming Group

Pharming Group N.V. has presented its (unaudited) financial report for the full year ended 31 December 2016. Sijmen de Vries, [...]

10Mar, 2017

KalVista appoints Senior Vice President of Medical

KalVista Pharmaceuticals, Inc. has appointed Andreas Maetzel, M.D., M.Sc., Ph.D, to the role of Senior Vice President, Medical. “Andreas Maetzel [...]

8Mar, 2017

Attune Pharmaceuticals announces pre-clinical data

Attune Pharmaceuticals, a biotechnology company focused on the discovery and development of novel oral small molecule therapeutics for the treatment of [...]

28Feb, 2017

Positive interim results from APeX-1 trial

BioCryst Pharmaceuticals, Inc. has announced results from an interim analysis of its Phase 2 APeX-1 trial in HAE. APeX-1 is a dose [...]

23Feb, 2017

Phase 1b results for investigational treatment published

The New England Journal of Medicine has just published the results from the Phase 1b study of lanadelumab (SHP643; formerly DX-2930) [...]

17Jan, 2017

European Commission amends Marketing Authorisation for Ruconest

Following the positive opinion of the Committee for Medicinal Products for Human Use (CHMP), the European Commission has adopted the [...]

24Dec, 2016

Global Perspectives – the HAEi magazine #1/2016 is out now

We are excited to inform you that the first edition of "Global Perspectives" - the HAEi magazine - is out now. Please download [...]

23Nov, 2016

KalVista Closes Merger with Carbylan

KalVista Pharmaceuticals, Inc. has announced the closing of the previously announced merger with Carbylan Therapeutics, Inc. As a result of the [...]

17Nov, 2016

A Randomized Trial of Subcutaneous C1-INH for HAE Attack Prevention

Current options for prophylaxis of acute HAE attacks are very limited. The international, prospective, double-blind, crossover, phase III COMPACT trial [...]

15Nov, 2016

Results of phase II study for prophylaxis of HAE attacks

The results of a “Randomized, Double-Blind, Placebo-Controlled Trial of Recombinant Human C1 Inhibitor for Prophylaxis of Hereditary Angioedema Attacks” has been [...]

15Nov, 2016

Pharming announces progress on financing

Pharming Group N.V. has made significant progress with financing towards completion of the transaction with subsidiaries of Valeant Pharmaceuticals International, [...]

11Nov, 2016

CHMP adopts positive opinion to include self-administration for Ruconest

The Committee for Medicinal Products for Human Use (CHMP), an advisory committee of the European Medicine Agency (EMA), has adopted [...]

28Oct, 2016

Financial report from Pharming

Pharming Group N.V. presents its financial report for the nine months ended 30 September 2016. From CEO Sijmen de Vries' comments: [...]

12Sep, 2016

HAEi Newsletter #4/2016 out now

We are excited to inform you that the fourth edition of the 2016 newsletter is out now. Again, the newsletter offers our [...]

31Aug, 2016

FDA Accepts Application for Subcutaneous Prophylactic Therapy

The U.S. Food and Drug Administration (FDA) has accepted for review the Biologics License Application (BLA) for CSL Behring's low-volume [...]

11Aug, 2016

KalVista Initiates Phase 1 Clinical Trial for HAE Treatment

KalVista Pharmaceuticals announces the dosing of the first subject in a first-in-human clinical trial to evaluate the safety, pharmacokinetics and [...]

11Aug, 2016

BioCryst Initiates APeX-1 Clinical Trial of BCX7353 for HAE

BioCryst Pharmaceuticals, Inc. has dosed the first subject in the APeX-1 clinical trial of BCX7353 for the oral treatment of [...]

9Aug, 2016

Pharming acquire all North American commercialization rights to Ruconest

Pharming Group N.V. has entered into a definitive agreement to acquire all North American commercialization rights to its own product [...]

5Aug, 2016

BioCryst continues to make progress

Announcing the BioCryst Pharmaceuticals financial results for the second quarter of 2016 Jon P. Stonehouse, President & CEO, said: "We continue to [...]

19Jul, 2016

U.S. FDA Approves Berinert as the First and Only Pediatric Treatment

The U.S. Food and Drug Administration (FDA) has approved the use of Berinert [C1 Esterase Inhibitor (Human)], the CSL Behring therapy for treating [...]

18Jul, 2016

Pharming Announces Positive Results from Trial with Ruconest

Pharming Group N.V. has announced positive results from a Phase 2 clinical study of Ruconest (recombinant C1 esterase inhibitor, 50 IU/kg) [...]

15Jul, 2016

Pharming amends Ruconest Distribution Agreement with Sobi

Pharming Group NV and Swedish Orphan Biovitrum AB (Sobi) has signed an amendment of their Ruconest distribution agreement from 2009. In addition [...]

22Jun, 2016

HAEi Newsletter #3/2016 out now

We are excited to inform you that the third edition of the 2016 newsletter is out now. Again, the newsletter offers our [...]

16Jun, 2016

Carbylan and KalVista Enter into Share Purchase Agreement

Carbylan Therapeutics, Inc. and KalVista Pharmaceuticals Ltd. have entered into a definitive share purchase agreement pursuant to which the shareholders [...]

2Jun, 2016

12,000,000+ steps for HAE

Before hae day :-) 2016 quite a number of people told HAEi that they would really have liked to take [...]

26May, 2016

80 people walked the Camino for HAE

From 15 to 17 May 2016 almost 80 people – the majority of them suffering from HAE – walked part [...]

19May, 2016

KalVista to Support Global HAE Conference

KalVista Pharmaceuticals supports the third HAE Global Conference in Madrid, Spain, from 19-22 May 2016. Andrew Crockett, KalVista’s CEO, said: [...]

19May, 2016

Change to Pharming strategy now bearing fruit

From the Pharming Group N.V. financial report for the first quarter ended 31 March 2016: During the quarter we initiated [...]

17May, 2016

CSL Behring Commemorates 2016 hae day :-)

CSL Behring joins the global HAE community today in recognition of the fifth annual hae day :-), an initiative led [...]

17May, 2016

Pharming Group Supports HAE DAY :-) 2016

Pharming Group N.V. supports the Fifth Annual International Hereditary Angioedema Day, hae day :-) taking place on 16 May 2016 and aiming [...]

6May, 2016

Working through the start-up activities

  "We are currently working through the start-up activities for the APeX-1 trial of BCX7353 for prevention of angioedema attacks [...]

1May, 2016

HAEi Newsletter #2/2016 out now

We are excited to inform you that the second edition of the 2016 newsletter is out now. Again, the newsletter offers our [...]

27Apr, 2016

Join the global HAE Walk

  Quite a number of people have told HAEi that they would really have liked to be with us in [...]

22Apr, 2016

Raising awareness step by step on the Camino

80 people – most of them suffering from a rare and potentially fatal disease – will meet mid-May in northern [...]

8Apr, 2016

Change in Marketing Authorization Terms For Ruconest

The European Commission has adopted the CHMP recommendation to include the treatment of HAE attacks in adolescents with HAE and [...]

30Mar, 2016

Shire 2015 Annual Report

HAE related information from the Shire plc 2015 Annual Report: The $6 billion acquisition of Dyax expands and extends our [...]

30Mar, 2016

Global Blood Therapeutics Reports Recent Business Progress

Global Blood Therapeutics, Inc., a biopharmaceutical company developing novel therapeutics for the treatment of grievous blood-based disorders with significant unmet [...]

24Mar, 2016

Cinryze now available in Canada

Cinryze is now available in Canada to patients with HAE who may benefit from routine prevention. It is the first and only treatment [...]

12Mar, 2016

80 people to walk the Camino for HAE

For the 2016 version of the awareness day hae day :-) the global organization HAEi and the Spanish HAE organization AEDAF [...]

10Mar, 2016

Pharming’s Report on Preliminary Financial Results 2015

In the financial report for the full year that ended 31 December 2015 Sijmen de Vries, CEO and Chairman of the [...]

9Mar, 2016

Arrowhead Presents Preclinical Data on Possible New HAE Medication

Arrowhead Research Corporation, a biopharmaceutical company developing targeted RNAi therapeutics, has presented additional preclinical data suggesting that ARC-F12, an RNAi therapeutic [...]

9Mar, 2016

Alnylam announcing addition of therapeutic for HAE treatment

Alnylam Pharmaceuticals, Inc. is announcing the addition of a new program to the company’s genetic medicines pipeline, ALN-F12, an investigational [...]

4Mar, 2016

Queen Letizia Accepts Presidency of Honor for HAE Global Conference

It is with the greatest of pleasure that HAEi and AEDAF have received confirmation from the Royal Household of His [...]

4Mar, 2016

Avalanche Biotechnologies Reports Fourth Quarter and Fiscal 2015 Financial Results

Avalanche Biotechnologies, Inc., a gene therapy company committed to discovering and developing novel medicines for patients suffering from chronic or [...]

2Mar, 2016

HAE organization established in Serbia

Over the last few days 21 out of 33 known Serbian HAE families have attended the founding assembly of HAE [...]

1Mar, 2016

More than 400 signed up for HAE Global Conference

We are more than two months away from the opening of the HAE Global Conference 2016 but already we have [...]

1Mar, 2016

Pharming Supports Rare Disease Day

Pharming Group N.V. reiterates it commitment to the treatment of rare diseases on Rare Disease Day 2016, an annual global [...]

27Feb, 2016

Committee for Medicinal Products for Human Use issues positive opinion to European Commission

Following evaluation of a dossier submitted by Pharming Group N.V. last year, the Committee for Medicinal Products for Human Use (CHMP) [...]

24Feb, 2016

BioCryst Reports Full Year 2015 Financial Results

BioCryst Pharmaceuticals, Inc. has announced financial results for the fourth quarter and full year ended December 31, 2015. "In 2015, we gained clarity [...]

12Feb, 2016

Shire announces full year 2015 results

As Shire announces unaudited results for the year to 31 December 2015, Flemming Ornskov, M.D. CEO, comments: "In 2015, we significantly [...]

11Feb, 2016

Zika Virus and Plasma Protein Therapies

Recent scientific and public press reports have heightened awareness of the Zika virus and its emergence in the Americas. The [...]

10Feb, 2016

Shire Marks Anniversary with Global Childrens’ Program

To mark the company’s founding 30 years ago this year, Shire plc is launching a new initiative designed to positively affect [...]

9Feb, 2016

Pharming And Cytobioteck Announce Extension Of Distribution Agreement For Ruconest

Pharming Group N.V. has extended the exclusive distribution agreement with Cytobioteck S.A.S., a privately owned Bogota, Colombia based specialty healthcare [...]

8Feb, 2016

BioCryst Announces Results From OPuS-2

BioCryst Pharmaceuticals, Inc. has announced results from OPuS-2 (Oral ProphylaxiS-2), a clinical trial of avoralstat administered three times daily as a liquid-filled soft gel formulation [...]

2Feb, 2016

Avalanche and Annapurna Announce Proposed Merger

Avalanche Biotechnologies, Inc. and Annapurna Therapeutics SAS have entered into a definitive agreement providing for the acquisition of all outstanding [...]

26Jan, 2016

Come join us in Spain

As you might have noticed in previous information from HAEi, we will be walking part of the pilgrimage route El [...]

24Jan, 2016

Shire Completes Acquisition of Dyax

Shire plc has completed its acquisition of Dyax Corp. in an all-cash transaction. Shire’s CEO, Flemming Ornskov, MD, MPH, commented: “We [...]

12Jan, 2016

Shire to combine with Baxalta, creating the global leader in rare diseases

The boards of directors of Shire plc and Baxalta Incorporated have reached an agreement under which Shire will combine with [...]

6Jan, 2016

Completion Of Patient Enrolment In Clinical Study Of Ruconest

Pharming Group N.V. has completed the patient enrolment in the Phase 2 clinical study of Ruconest, (recombinant C1 esterase Inhibitor, 50 IU/kg), [...]

21Dec, 2015

South Korean Marketing Authorization For Ruconest

Pharming Group N.V.  and it's Seoul based South Korean specialty pharma partner Hyupjin have received the marketing authorization for Ruconest in South [...]

15Dec, 2015

Shire goes to Phase 3 in 2016

In 2016, the Shire plc pipeline will include more than 10 programs in Phase 3 trials and compounds already under regulatory review. Shire’s [...]

10Dec, 2015

CSL Behring Expands Operations to Russia

CSL Behring is opening operations in Russia in order to provide more patients with greater access to treatment. This is particularly significant [...]

7Dec, 2015

EMA Reaffirms Important Health Benefits And Safety Of Ruconest

The European Medicines Agency (EMA) has recently renewed the marketing authorization for Ruconest for an unlimited period. Ruconest, the first and only [...]

26Nov, 2015

Newsletter #7/2015 out now

We are excited to inform you that the seventh edition of the 2015 newsletter is out today. Again, the newsletter offers our [...]

10Nov, 2015

Dyax Corp. presents clinical data from DX-2930 Phase 1b study

Dyax Corp. presented two oral presentations describing clinical data from its DX-2930 Phase 1b study at the American College of [...]

8Nov, 2015

BioCryst Reports Third Quarter 2015 Financial Results

  At the presentation of the BioCryst Pharmaceuticals, Inc. financial results for the third quarter of 2015 Jon P. Stonehouse, [...]

Upcoming Global HAE Events

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Nomahegan Park
Cranford NJ United States

Sep 23, 2017 at All Day

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Skopje Marriott Hotel
Skopje Macedonia

Sep 29, 2017 - Oct 1, 2017 at All Day

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Grand Central Hotel
Glasgow Scotland

Sep 30, 2017 at All Day

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Roger Williams Park – Carousel Village
Providence RI United States

Oct 7, 2017 at All Day

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Chatfield State Park
Littleton CO United States

Oct 22, 2017 at All Day

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Bergendal
Sollentuna Sweden

Nov 10, 2017 - Nov 12, 2017 at All Day

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Nov 10, 2017 at All Day

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Mercure St Paul’s
Sheffield United Kingdom

Nov 18, 2017 at All Day

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– Language: Global

May 16, 2018 at 12:00 am

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