The second weekend in November 2017 the beautiful conference venue Bergendal – right at the rim of Edsviken bay in Sollentuna just 20 minutes north of Stockholm, Sweden served as the inspirational setting for the HAE Scandinavia Conference 2017.
The conference opened with two international keynotes. First Professor Markus Magerl from Europe’s largest university clinic Charité in Berlin, Germany gave a historical insight into the development of HAE since the 1880ies – and not least elaborated on the possible future treatment options for HAE patients. Professor Magerl said that there has been a huge interest in the development of new medication over the last decade and that much will come over the next few years. We will see further development of well-known products as well as new solutions, maybe a c1-inhibitor from plants (ibio) or a gene block (Ionis Pharmaceuticals). Professor Magerl expects that a further focus on prophylaxis will change the treatment paradigms, as it will pave the way for better and more individualized treatment.
HAEi President Anthony J.Castaldoo, who spoke about the importance of patient advocacy, delivered the second international keynote. Among many other things he referred to a HAEi survey covering 37 countries and around 10,000 patients – and proving that access to modern medication leads to happier and healthier lives. He stressed that if HAE patients are looking to live normal lives advocacy can lead them there.
the Danish Professor Annette Bygum from Odense University Hospital delivered a third keynote presentation. She told about the experiences of the Danish hospital from treating HAE patients for around 20 years – and emphasized the importance of patients taking part in clinical studies. In her words: ”Without clinical studies there will be no development of new medicines”.
The very full program also included two sessions with updates from HAE Scandinavia. Among other things the HAE Scandinavia President Henrik Balle Boysen told the around 125 conference participants about the new Scandinavian treatment recommendations that the organization is presently working on together with the Medical Advisory Panel. The first version of the recommendations is expected to be ready for publication in the middle of 2018.
As for an online survey on patient/relative behavior – funded by CSL Behring – Henrik Balle Boysen said that it has involved more than 150 patients and relatives and he referred to some of the findings regarding the patients:
- 30 percent had to wait for more than 10 years before diagnosis,
- 40 percent had 25 or more attacks during the last 12 months,
- 51 percent treat their attacks right away while 39 percent treats within one to four hours,
- 84 percent have been instructed in self-medication,
- 47 percent have been treated wrongly during an acute attack,
- 39 percent have been told that the medication is expensive and shouldn’t be taken unless you really need it,
- 27 percent say that HAE has had an influence on theipossibilitieses/choises regarding work.
Henrik Balle Boysen also updated the participants on the new HAE Scandinavia member database HAEi Connect, developed and sponsored by HAEi. Furthermore, he spoke about recently published information material, experiences from the HAEi Youngers’ Summer Camp 2017, and expectations regarding the HAE Global Conference 2018.
The conference program also included updates on the HAE situation in Denmark (Annette Bygum), Norway (Dr. Olav Rogde Gramstad from Oslo University Hospital), and Sweden (Dr. Annika Wahlin from Umeå University Hospital).
The 2017 Scandinavian conference closed with a Q&A session with all the presenting doctors taking part – and it was followed by the General Assembly only for members of HAE Scandinavia.