According to a story from PR Newswire, the biotechnology company Ionis Pharmaceuticals recently announced promising findings from its phase 2 clinical trial. This clinical trial was evaluating the company's experimental…
The French National Agency for Medicines and Health Products Safety, also known as ANSM, has granted Temporary Authorization of Use of berotralstat for those living with hereditary angioedema (HAE) above…
Patients with hereditary angioedema (HAE) experience recurrent "attacks," or periods of swelling under the skin. Now, in a Phase 2 clinical trial, researchers are evaluating PHVS416 for patients with…
Supporting the development of my children's talents has returned the joy of life to our whole family - in spite of HAE diagnosis and other obstacles in life. As you…
Clinical stage pharmaceutical company KalVista Pharmaceuticals ("KalVista") saw positive data from a Phase 2 clinical trial evaluating its experimental therapy KVD900, shared MedCity News. The Phase 2 trial was exploring…
After in-licensing Icatibant, a Bradykinin B2 receptor agonist, from Slayback Pharma, global pharmaceutical and biosimilar leader Sandoz is launching a generic version in the United States. According to a…
In a press release from late November, pharmaceutical company BioCryst Pharmaceuticals, Inc. ("BioCryst") announced the publication of data from its APeX-J clinical trial in Allergy. During the trial, which was…
HAE Junior is a Czech-based patient organization aiming to improve the quality of life of children & youth with hereditary angioedema (HAE). It was set up in December 2019 in…
According to an article from Biospace, Takeda Pharmaceuticals has released the results from their Phase 3 HELP trial, an extension study of TAKHZYRO. This hereditary angioedema (HAE) treatment has shown…
From November 13th through the 15th, the American College of Allergy, Asthma & Immunology (ACAAI) held their 2020 Annual Scientific Meeting. While the coronavirus pandemic necessitated that the meeting be…
Although the American College of Asthma, Allergy and Immunology (ACAAI) Annual Scientific Meeting has wrapped up for this year, there is still a ton to learn from the presentations…
People with hereditary and acquired angioedema have unpredictable attacks of swelling/inflammation/pain, most of which can be managed with rescue meds like Firazyr, Berinert, Kalbitor, and Rhucin, plus a prescribed med…
According to a story from GlobeNewswire, the company BioCryst Pharmaceuticals, Inc., recently announced that its drug berotralstat (marketed as Orladeyo) will be available in the UK under the Early Access…
On October 22, 2020, BioCryst Pharmaceuticals, Inc. ("BioCryst") announced the publication of data from a Phase 3 clinical trial evaluating berotralstat for patients with hereditary angioedema (HAE). As a…
Ionis Pharmaceuticals has just released their findings from a study investigating the effect of IONIS-PKK-LRx and IONIS-PKKRx in hereditary angioedema (HAE) patients with different forms of the disease. These therapies work to reduce…
Over 2018 and 2019, BioCryst Pharmaceuticals conducted two surveys to better understand the needs and expectations of hereditary angioedema (HAE) patients. Overall, they found that despite progress in HAE therapies,…
Speakers: Leah Weisbecker, Living with HAE & Marc Riedl Join this live presentation featuring a physician who treats HAE and an HAE patient advocate. You will also have the opportunity…
Arabel Standingbear sketches figures with lead pencils and paints realistic scenes with acrylics. Her poem was accepted by a museum. She has won in local art contests between schools, and…
As a child, my favorite fairy tale was about a princess who is locked away in a tower and guarded by a terrible dragon. Finally, a prince comes along, slays…
May 16th is celebrated annually as Hereditary Angioedema (HAE) Awareness Day. The event was established with the goal of spreading awareness about this rare condition among both the general public…
The European Commission has just granted their approval to Pharming for an extended indication of RUCONEST (conestat alfa) for Hereditary Angioedema (HAE). This extension allows the therapy to be utilized for…
Speakers: Jason Meyer, Living with HAE & Raffi Tachdijan Join this live presentation featuring a physician who treats HAE and an HAE patient advocate. You will also have the opportunity…
by Danielle Bradshaw from In The Cloud Copy Hereditary angioedema (HAE) is a rare condition in which a person has swelling beneath their skin (which can occur in any part…
According to Angioedema News, the European Medicines Agency (EMA) is now reviewing berotralstat as a potential therapy to combat severe inflammation attacks in patients with hereditary angioedema. Hereditary Angioedema Hereditary…
HAE is not my story. But it’s definitely part of my story. Looking back, I realize that my late childhood and early teen years held some occasional, unexplained swelling events that…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
