Rikke

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So far PlusR has created 134 blog entries.

News from Australia and New Zealand

2021-05-10T08:42:03+02:00April 6, 2021|Australia, Australia/Oceania, New Zealand|

From CEO Fiona Wardman, HAE Australasia HAE Australasia held a strategy meeting to talk about current and new projects for the year ahead. We have some exciting and useful ideas for projects and initiatives, and we look forward to bringing them to fruition. HAE Australasia is very proud of the videos and downloadable documents [...]

News from Spain

2021-05-10T08:37:03+02:00April 6, 2021|Europe, Spain|

From President Sarah Smith, HAE Spain (AEDAF) Activities: We do not plan to hold any face-to-face events in 2021 due to the ongoing pandemic. We are involved in various activities, including a documentary for hae day :-) 2021, informative online training courses and programs, a burden of illness survey, etc. We also plan to [...]

News from Serbia

2021-05-10T08:36:10+02:00April 6, 2021|Europe, Serbia|

From Ivana Golubović, HAE Serbia 2020 has been a challenging year for our HAE community. Delays in the supply of our medicines, limited access to hospital care, etc. However, it also gave me the impression that rare disease patients mentally handled the COVID-19 situation much better than the rest of our otherwise healthy community. [...]

News from France

2021-05-10T08:35:18+02:00April 6, 2021|Europe, France|

In February, HAE France (AMSAO) presented a video conference meeting with the adult and pediatric team from the angioedema reference center CREAK in Grenoble. The event was intended for children or adolescents and their parents as it enabled the sharing of information and experiences between caregivers and patients.  Dr. Boccon-Gibod talked about the 130 [...]

News from Canada

2021-05-10T08:33:57+02:00April 6, 2021|Canada, North America|

We made it through 2020 and excited to welcome 2021! Despite dealing with COVID-19 and all that it throws at us, thankfully we have some great achievements to share.  Earlier we mentioned that we launched our 2020 National Report Card survey to our membership; we are thrilled to report we had a fantastic participation [...]

News from Hungary

2021-05-10T08:32:58+02:00April 6, 2021|Europe, Hungary|

HAE Hungary held the first-ever online event on 30 November 2020 with about 20 participants including patients, physicians, and representatives of the pharmaceutical companies Takeda and ExCEEd Orphan representing Pharming. It was a great two-and-a-half-hour meeting.  At the first part of the meeting, Zoltan Maros, the Secretary of HAE Hungary talked about the events [...]

News from Russia

2021-05-10T08:15:59+02:00April 6, 2021|Central Asia, Russia|

From HAE Russia Pandemic spreading affected the plans of HAE Russia. Many events had to be switched to online. However, even remotely, we actively helped patients with HAE to deal with legal issues, organizing online meetings with doctors, psychologists and lawyers. Representatives of HAE Russia participated in major international events – and during the [...]

News from Bulgaria

2021-05-10T08:12:16+02:00April 6, 2021|Bulgaria, Europe|

From Chairman Danail Dimov, HAE Bulgaria The next important goal HAE Bulgaria wants to achieve is to improve the access of HAE patients to plasma protein therapies and in particular to HAE prophylaxis. Our goal is to collaborate more closely with patients’ community, Bulgarian authorities and health care professionals in order to improve the [...]

News from Kenya

2021-05-10T08:14:01+02:00April 6, 2021|Africa, Kenya|

In February, HAE Kenya President Patricia Karani appeared on NTV Kenya, the country’s number one urban station owned by East Africa’s largest media house the Nation Media Group. The program focused on plasma, critical for treating many serious health problems and how a pint of blood saves more than a life. You can see [...]