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 Patient Advocate for the Mediterranean, North Africa and the British Isles, and the HAEi Team, I have been working on the regional website for the Middle East and North Africa. The region’s HAE patients and caregivers will have their own website in Arabic and French that will highlight the most important information from the HAE community. We expect to continue our work over the summer and have the website launched in September at the latest.
Another great piece of news for the HAE community in the Middle East, North Africa, and Sub Sahara Africa is the 2021 HAEi Virtual Workshop. I am delighted to inform you that the Regional Patient Advocates, respectively for each region, and the HAEi Team have started long term and difficult work on this project. By engaging HAEi member organizations, HAE patients, caregivers and HAE expert physicians, we wish to deliver another helpful event. Our previous experiences with virtual workshops enable us to make this particular project even more impactful, and I look forward to it.
Also, in the last months, I have had the pleasure of working closely with Takeda and the company’s Middle East Team on different projects, increasing HAE awareness in the region, with an initial focus on projects to be launched in Saudi Arabia and the United Arab Emirates. We exchanged information and discussed how to make the project more valuable for patients. I was happy to present HAEi at the Takeda Gulf & Lebanon Patient Webinar held on 5 June 2021.
Furthermore, together with Rashad Matraji, the HAEi Patient Advocacy Contractor in the Middle East, I have finalized the HAEi Emergency Department Poster in Arabic and organized a Zoom meeting with the attendance of the member organizations from Lebanon, Kuwait, Jordan and Qatar.
In April, I organized Zoom virtual meetings with the member organizations in Belarus, Georgia, Hungary, Kazakhstan, the Netherlands, Poland, Russia, Slovakia and Ukraine. We discussed several topics, including the HAE TrackR app, the HAEi Advocacy Academy, the HAEA Brady Club and the hae day :-) anniversary. The meetings were very informative, and I received great feedback from the member organizations on current activities they have been doing separately or in collaboration with HAEi partners.
I have participated in person or virtually in several activities to celebrate hae day :-) 2021, including the Global Walk, the HAE Russia National Summit and the HAE Poland Virtual Meeting.
Furthermore, I had the pleasure of bringing another level of HAEi’s decentralized approach to life through the organization of Regional Medical Advisory Panels (RMAPs) for Central Eastern Europe, Benelux and the Middle East. In the two RMAP meetings we have held so far, ten Advisors participated, all HAE expert physicians. We had a very productive discussion, and it was so great to hear the physicians’ perspective on different HAE areas. Thank you all for your contribution; this is very much appreciated!
Finally, some news from a few of the countries I cover:
HAE Russia has produced and distributed the HAEi Emergency Department Poster among local hospitals and clinics. Also, the organization has held seven awareness meetings in seven venues around Russia (e.g. Saint Petersburg) dedicated to HAE patients and health care professionals. On 15-16 May 2021, HAE Russia organized an HAE National Summit in Moscow. Finally, the organization has supported the successful registration of Lanadelumab (Takhzyro).
HAE Slovakia has actively supported Takeda’s HAE awareness campaign resulting in the reimbursement for and access to long term prophylaxis (Takhzyro) for patients in Slovakia. The next step will be the recording of an HAE awareness video, possibly with patient participation. Currently, the organization is translating into Slovak the HAEi Emergency Department Poster and is interested in implementing the HAEA Brady Club Activity Book.
HAE Poland has developed the organization’s own Regional Patient Ambassador project. Four such ambassadors are in constant contact with patients and support them on a daily basis. It is amazing how this project was needed by the Polish patient community and how much is yet to be done in this area.
Moreover, the spring edition of the HAEA Brady Club Activity Book has been translated, printed and sent to pediatric patients participating in this particular project. As if this was not enough, HAE Poland actively supports reimbursement processes regarding on- demand treatments and long-term prophylaxis.
Finally, it should be mentioned that the best of the previous electronic patient diary app used by Polish patients has been combined with the new HAE TrackR app from HAEi – and this new app is now available in Polish.
