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 communication platform, enabling joining the association, the possibility of obtaining the HAE Emergency Card, receiving the necessary educational materials, psychological assistance, as well as detailed information on diagnosis and treatment centers.
Due to reimbursement expiration for on-demand HAE treatments in Poland, on behalf of the Polish HAE patients, I participated in several meetings with decision-makers, emphasizing how important it is to keep access to current treatment options and what lack of access means to patients.
It is with great pleasure that I can inform you that the HAE National Center at the University Hospital in Krakow has become a new member of ACARE and I expect another two centers from Poland to apply for membership soon.
To improve the current state of awareness within members of HAE Belgium, I have found a volunteer (an HAE caregiver) with whom we will work on a new website for the Belgian patients. This yet has to be approved by the Chairwoman of HAE Belgium, but we hope to start our work in September. Also, I have successfully contacted Professor Cedric Hermans from the Saint-Luc Hospital in Brussels, who offers a helping hand in reaching HAE patients in Luxembourg, and I am looking forward to this very much.
To attract more HAE patients and to help establish new member organizations in the Middle East, I have recently been in contact with health care professionals from Jordan, Saudi Arabia, Kuwait and Oman.
Furthermore, I am happy to share with you that the HAE Syria patient lead, Mr. Mohamad Mechaan, has finalized his university graduation project called “Hereditary Angioedema in Syria”.
Together with the HAE International Team, I am currently organizing the 2020 HAEi Central Eastern Europe & Benelux Workshop that will be held in the fourth quarter of this year. Due to the global pandemic situation and after communication with member organizations from my regions, the 2020 Workshop will be organized in virtual form. To attract as many patients as possible and increase the efficacy of the meeting, HAE International plans to use multiply languages translation service.
Stay tuned and stay healthy!
