I am so happy to catch up with you again and share what happened over June, July, and August. It has been a hectic period, full of advocacy activities and crucial successes. First, I would like to share with you some wonderful news about the situation of HAE patients in my home country, Poland. [...]
This input is dated May 2021 >> View content in polski In brief Name for organization: Polish Association of Angioedema Patient’s Aid – SWELLING BEAUTIFULLY 400 members at 1 Jan 2021 Name of approved HAE treatments: Berinert 500 Berinert 1500 Firazyr Fun/interesting facts Poles celebrate a Name [...]
By Michal Rutkowski, Regional Patient Advocate for Central Eastern Europe, Benelux and Middle East It has become a tradition that each year October brings the largest annual gathering for the HAEi community in Central Eastern Europe and Benelux. Part of the tradition is that Poland hosts a yearly regional advocacy event dedicated to patients, [...]
Hello everyone! I hope you had a fabulous hae day :-) and you did enjoy what HAEi had prepared to celebrate the 10th anniversary of the awareness day. The past few months have been incredibly busy and full of different activities in the regions I am responsible for. Together with Maria Ferron, the Regional [...]
From President Michal Rutkowski, HAE Poland (the Swelling Beautifully Association): Apart from the global pandemic situation, 2020 itself has been a challenging time for HAE Poland. This year, all three HAE treatments reimbursed in Poland (C1-INH, rec C1-INH, icatibant) lose reimbursement approvals and the goal no. 1 for us was effective activities enabling the [...]
From Regional Patient Advocate Michal Rutkowski I am delighted to report that thanks to the HAE International hosted website tool HAE Poland (the Swelling Beautifully Association) has launched a completely new web, containing a number of user-friendly features both for patients and health care professionals. Above all, the site has become a fully digital [...]
From Regional Patient Advocate Michal Rutkowski I have successfully presented the Regional Advisory Group concept and Code of Conduct to all member organizations from Central Eastern Europe and Benelux. None of them had any doubts following the idea, and all countries declared participation in the project. Also, together with Advocacy Contractor Rashad Matraji, we have [...]
From Regional Patient Advocate Michal Rutkowski I organized and held Regional Workshops in Wroclaw and Lodz, Poland, during February. Together with HAE Ukraine, I have been working on preparations for the national summit to be held in Ukraine – and along with HAE Belarus, I have worked on the concept and schedule for the immunology [...]
By Michal Rutkowski, Regional Patient Advocate for Central and Eastern Europe, Gulf Region & Middle East: The penultimate weekend of October 2019 saw the largest gathering of the year of the HAE International Central Eastern Europe community. As has become the tradition, the capital city of Poland hosted for the fourth consecutive time the annual regional advocacy event, dedicated to [...]
From President Michal Rutkowski, HAE Poland (Swelling Beautifully Association): The period of April and May 2019 has been extremely busy for the Polish HAE Patients’ Organization with providing educational projects for HAE national community and attending in numerous important events. With the on-going project called “HAE Regional Workshops” Swelling Beautifully visited and organized another two amazing meetings, this time [...]
HAE International is a global non-profit network of member organizations dedicated to raising awareness of hereditary angioedema and improving the lives of people with HAE.
HAE International (HAEi)
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HAE International (HAEi)
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gro.ieah@ofni
