Client: Polish Association for Helping Sick People with Vasoedema ‘Pięknie Puchnę’ (I Swell Beautifully)
Brief: Continuation of the educational campaign ‘HAE. Fight for breath. Endure the pain’ in order to (re)build awareness of HAE, showing what challenges patients face despite the diagnosis of the disease, including accessibility to preventive treatment.
Successes:
- Building interest around the disease, both from patients approaching the Association for help with further diagnosis, as well as policy makers thanking the Association for the HAE awareness campaign.
- Nearly 100 publications with a reach of over 2 million.
- Coverage of preventive treatment by reimbursement.
- Awarded a Bronze Złoty Spinacz in the Health and Medicine category in 2021.
Challenges:
- Bringing public and media attention to an ultra-rare disease that affects only a small percentage of the population.
- Create a strategy to bring the problem to the attention of key decision makers.
Description:
HAE, hereditary angioedema, is an ultra-rare disease that patients experiencing symptoms, doctors unable to make a diagnosis for an average of 13 years, decision-makers making treatment decisions, and the health media do not know exists. As part of the socio-educational campaign ‘HAE. Fight for breath’.
Activities:
- Creating a video in which actor Bartlomiej Topa portrayed the reality of life for a patient suffering from HAE. An important role in the video was played by the superimposed make-up, which made the artist look like an HAE patient during an attack involving the face.
- We prepared the making-of video, which is a recording of a conversation between the actor and Michał Rutkowski, President of the Association. With the prepared material, we drew attention to the tragic situation of HAE patients, who wait on average as long as 13 years for a diagnosis.
- The development of a ‘patient dossier’, including medical records, a set of examinations, treatments, surgeries, which compiled into a thick folder, was intended to raise awareness of what HAE patients experience during the diagnosis process and what challenges they face despite the diagnosis of the disease, followed by distribution of the material to key decision-makers and medical journalists.
- Active support of the Association with its Twitter account.
- Media relations.