From Regional Patient Advocate Javier Santana: As part of the events of hae day :-) 2019, Dr Olga M. Barrera (second from left) made an exhibition “The Multiple Faces of HAE” at the San Fernando Hospital in Panama to educate and raise awareness among the hospital’s medical community. Dr Barrera attends to 20 patients with HAE in Panama City. During [...]
From Chief Regional Patient Advocate Fiona Wardman: A date has been set for the first patient “meet and greet” in Seoul. HAEi has previously met with Korean doctors, the Korean Organization for Rare Diseases (KORD), and industry partners in Seoul. We again look forward to visiting Korea in November to meet with patients and their carers.
From Chief Regional Patient Advocate Fiona Wardman: Now that the date and venue for the first patient meeting in Hong Kong have been finalized, HAE International is very excited to meet with patients, carers, doctors, industry partners and the Hong Kong Alliance of Rare Disease for this special meeting in August.
From Chief Regional Patient Advocate Fiona Wardman: With the help of the very caring and knowledgeable Dr Shyur in Taipei, HAE International held the first-ever HAE patient meet and greet in Taipei, Taiwan on 19 May 2019. Tony Castaldo and I had the pleasure of meeting patients and carers, listening to their very personal stories and how HAE [...]
From Regional Patient Advocate Michal Rutkowski: I plan to participate in the Immunology Conference in Astana on 5-6 October 2019 dedicated to health care professionals, where a separate HAE track will be organized. I work closely with Sergey Morozov from HAE Kazakhstan to enable organizing patients meeting during the conference dates.
From Regional Patient Advocate Michal Rutkowski: I have established contact with Professor Maia Gotua from the Allergy & Immunology Center in Tbilisi, who has been diagnosing HAE patients. There have been numerous patients already diagnosed in Georgia, however at this point no access to and reimbursement for modern HAE therapies are available. Currently, the Professor and I work on the [...]
From Regional Patient Advocate Michal Rutkowski: The HAE Regional Workshop organized by HAE Poland in the city of Bialystok, Poland became an international project with the attendance of patients from Belarus. Similarity of the language and mostly mutual respect and motivation shared among the patients is the key to the ultimate goal, which is the reimbursement for modern HAE [...]
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 [...]
From Regional Patient Advocate Maria Ferron: Dr Habid Ghedira has agreed with a patient (and a possible patient lead in the country) and their family to have a medical appointment to provide them with an official diagnose on HAE. Once this is done, we will start looking into the possibility of prescribing them with HAE modern medication and the set up [...]
From Regional Patient Advocate Maria Ferron: On the celebration of hae day :-) 2019, the Algerian Society of Allergology and Clinical Immunology (organized by Doctor Habib Douagui) organized at Beni-Messous University Hospital a day of sensitization and information for general practitioners and patients about chronic and disabling diseases. The 10th Euro-African Congress of Allergy and Clinical Immunology was held 12-13 June [...]