May 16 is HAE Day: Spreading Rare Disease Awareness
May 16 is recognized each year as HAE Day, a day dedicated to spreading awareness among the general public and the medical community about hereditary
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HAE Junior
HAE Junior
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.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on HAE
France Grants Early Access to Berotralstat for HAE Patients
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
PHVS416 for HAE: First Patient Dosed in RAPIDe-1 Trial
Patients with hereditary angioedema (HAE) experience recurrent “attacks,” or periods of swelling under the skin. Now, in a Phase 2 clinical trial, researchers are
Life with HAE through a Mother’s Eyes
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
Oral KVD900 Shows Promise for HAE
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
Generic Icatibant Now Available in U.S. for HAE
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
