I am happy to share the autumn successes and events in the Ukrainian Association of Patients. In September, with Takeda, a series of interviews with patients and medical professionals was completed and published. On the website careforyou.com.ua, in the video section, short educational videos have already been posted for viewing on the following topics:
- clinical manifestations of HAE,
- HAE examinations,
- a patient with HAE and his family,
- in search of the causes of HAE,
- interaction with medical professionals, treatment of an acute attack of HAE,
- issues with access to HAE treatment and prevention of HAE attacks.
Five patients and five doctors participated in the filming, and the result was amazing. This will help new patients and their families better understand hereditary angioedema, which is also an excellent guide for doctors who have not encountered this disease before.
And, of course, I hasten to share our participation in the 2024 HAEi Global Leadership Workshop in Copenhagen, Denmark, October 3-6. Ukraine was represented at the conference by seven participants: two doctors and five patient community representatives.
Based on an online survey of 43 patients, a report and poster for the scientific track were created with the help of Anastasia Bondarenko and Lyudmila Zabrodska. On behalf of the Ukrainian delegation, they presented updated data on the diagnostics and treatment of HAE in Ukraine and discussed challenges faced by medical professionals during the war.
The average delay in establishing a diagnosis is 8-10 years worldwide and 10-15 years in Ukraine. However, it is crucial to know that efficient treatment exists and can significantly improve the patient’s condition if the diagnosis is made in a timely manner.
The conference featured lively discussions on problematic issues of HAE differential diagnostics, comorbidities, and new promising solutions in treatment. In particular, one introduced the results of clinical trials of new oral medications (primarily injectable treatments are currently used) and gene therapy that could radically change the approach to treatment.
This event is an important step towards improving the life quality of patients with HAE and raising awareness about this disease. We can achieve significant changes together.
