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HAE Day 2023-Join the #active4HAE challenge and help us walk around the word for a good cause!
On May 16, the world is raising awareness for hereditary angioedema (HAE), a rare and potentially life-threatening disease that causes recurrent swelling attacks in various parts of the body. HAE affects about 1 in 40,000 to 50,000 people worldwide and is caused by a deficiency or dysfunction of a protein called C1-esterase inhibitor (C1-INH).
The theme for HAE Day 2023 is #active4HAE, encouraging everyone to participate in all types of activities that promote physical and mental well-being. Activity times will be converted into steps, and the total will power us around the world. Visit HAEday.org for examples of activities and reporting.
By being #active4HAE, we can not only improve our own health and happiness but also raise awareness and inspire others to join our cause.
I maj sætter vi fokus på GBS/CIDP!
Nu er det maj, og vi sætter fokus på sygdommene Guillain-Barré Syndrome (GBS) og Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).
Se her hvordan du kan hjælpe med at skabe opmærksomhed
When should you test for Alpha-1 Antitrypsin Deficiency?
Episode 3 of 3 with Dr Møller. Have you tested your COPD and asthma patients for Alpha-1 Antitrypsin Deficiency?
Many patients are diagnosed with asthma or COPD when some of them in reality suffer from Alpha-1 Antitrypsin Deficiency. This is why Helene Møller Frost encourages general practitioners to take a blood test for Alpha-1 Antitrypsin Deficiency on patients with asthma or COPD.
Kampagnen Portraits of Progress er nu kommet til Norden
Hvordan ser hverdagen ud for dem, der har blødersygdomme? Hvilke fremskridt er der sket inden for undersøgelse og behandling igennem de seneste tiår? Med den nye kampagne Portraits of Progress vil CSL Behring fremdrage beretninger fra mennesker som lever med hæmofili og fra andre, som er i berøring med sygdommen.
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Kraftig menstruation kan være tegn på en blødningsforstyrrelse
Mange kvinder lider unødvendigt af kraftige menstruationer uden at vide, om symptomerne kan skyldes en blødningsforstyrrelse. Nogle kvinder har tillige andre blødningssymptomer i hverdagen, som blå mærker, næseblod eller blødning i forbindelse med tandbørstning. Hør Dr. Anna Ågren fra Karolinska Universitetssjukhuset i Sverige fortælle om, hvor almindelig blødersygdomme er blandt kvinder, hvordan man kan finde ud af om man har kraftig menstruation, og om vigtigheden af at få en korrekt udredning af sin blødningsforstyrrelse her
Podcasts/Videocasts
A1R TIME - About life with Alpha-1 Antitrypsin Deficiency
Under the name A1R TIME we publish podcasts and videocasts were you´ll meet patients and experts sharing experiences and insights about the disease, about treatment options and current research. Our goal is to create a community for all affected by Alpha-1.
