NewsRSS2 days ago
This article invites people with HAE (hereditary angioedema) to take a quiz about the different doctors and specialists who help care for HAE patients. You can compare your answers to what other people answered. It's a way to learn more about building a good care team for managing this condition.
WHY IT MATTERSUnderstanding which specialists to see—such as allergists, immunologists, and emergency doctors—helps HAE patients get better coordinated care and faster treatment when attacks happen.
AdvocacyRSS2 days ago
This article offers practical advice for people with hereditary angioedema (HAE) who feel limited by their condition. The author encourages patients to focus on what they can do rather than what they can't, and suggests ways to live a full life while managing HAE symptoms.
WHY IT MATTERSHAE patients often experience social isolation and emotional burden from unpredictable swelling attacks; this article addresses the psychological impact and provides coping strategies to improve quality of life.
ResearchPUBMED3 days ago
Researchers in Germany studied health insurance records from 2017-2019 to understand how hemophilia A (a bleeding disorder) affects patients and how much it costs to treat. They found 257 patients with hemophilia A and grouped them by severity—mild, moderate, or severe—based on how much clotting medicine they needed. This study shows that insurance data can help doctors and researchers learn more about rare diseases like hemophilia A.
WHY IT MATTERSIf you have hemophilia A in Germany, this research demonstrates that your health insurance claims data can be used to better understand disease patterns, treatment costs, and care gaps—potentially leading to improved healthcare planning and resource allocation for your condition.
NewsUNITERARE4 days ago
The PAN Foundation's financial assistance program for hereditary angioedema (HAE) is currently closed and not accepting new applications. Hereditary angioedema is a rare genetic condition that causes sudden swelling in the face, throat, hands, feet, and digestive system. Patients who need help paying for HAE treatment should check back at the foundation's website or contact them directly to learn when the program might reopen.
WHY IT MATTERSIf you have hereditary angioedema and struggle to afford medications or treatment, this closed fund means you'll need to explore alternative financial assistance programs or payment plans with your healthcare provider right now.
Clinical trialUNITERAREApr 9
Researchers are testing a new medicine called difelikefalin to see if it's safe and works well for teenagers on kidney dialysis who have severe itching. Itching is a common problem for dialysis patients that can really affect their quality of life. This study will check whether the medicine helps reduce itching and what side effects it might cause.
WHY IT MATTERSThis is the first trial testing difelikefalin specifically in adolescents on hemodialysis with moderate-to-severe pruritus — a condition that significantly impacts quality of life but has limited treatment options for younger patients.
Clinical trialUNITERAREApr 3
This is a clinical trial testing a blood clotting medicine called Nuwiq in women and girls with hemophilia A who need surgery. Hemophilia A is a rare bleeding disorder where the body doesn't make enough of a protein that helps blood clot. The trial will study how well Nuwiq works and what dose is best for these patients during surgical procedures.
WHY IT MATTERSThis trial is specifically designed for women and girls with hemophilia A undergoing surgery — a population that often receives less research attention than males with the same condition.
NewsUNITERAREApr 3
The PAN Foundation's financial assistance program for hereditary angioedema (HAE) is currently closed and is not accepting new applications. This program previously provided up to $12,000 per year to help patients afford treatment costs. The fund status changed on April 2, 2026.
WHY IT MATTERSIf you have hereditary angioedema and rely on financial assistance to afford your medications, you'll need to explore alternative funding sources since this major assistance program is temporarily unavailable.