HAE Junior is a patient organisation seeking to improve the quality of life of children & young people
suffering from hereditary angioedema (HAE). HAE is a rare and potentially life-threatening immune
disorder, causing recurring painful swellings on various parts of the body.
The organisation was established in Prague, in December 2019, by a group of parents of HAE pediatric
patients.
HAE Junior’s main goals are:
1. ADVOCATE for better access to modern HAE medicine, therapies and care.
2. INFORM & ADVISE in relation to HAE diagnose.
3. FOSTER patient networking (inter)nationally.
4. SUPPORT INCLUSION of HAE kids & youth.
Here is a list of conditions this partner raises awareness and advocacy for:
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
From November 13th through the 15th, the American College of Allergy, Asthma & Immunology (ACAAI) held their 2020 Annual Scientific Meeting. While the coronavirus pandemic
Although the American College of Asthma, Allergy and Immunology (ACAAI) Annual Scientific Meeting has wrapped up for this year, there is still a ton
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
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
Happy Friday! November 1 is International Acromegaly Day. For those unaware, Acromegaly is a rare condition characterized by the presence of an elevated level of
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