Last September we celebrated another fantastic dystonia awareness month. Focus this year was the Patient Journey*. We had created a series of carousel posts describing a fictional cervical dystonia patient. Throughout the month we followed Lilly and her journey with dystonia from the first symptoms, through the various stages of diagnosis, treatment and living with dystonia. Her journey tells us not only about her medical experience but also about the emotional experience she is going through. These posts were liked and shared and engaged the community.
We also encouraged the dystonia patient community to do a short recording of how long it took to get diagnosed and send it to us.
We call this activity I am… It took.
https://dystonia-europe.org/i-am-it-took
Additionally we posted the usual content of dystonia facts, inspirational quotes and patient stories.
The post that engaged the most during the month was the infographic, inspired by a Dystonia UK infographic. Once again a great thank you to them for this excellent awareness idea!
Overall there was a slight increase in followers on the various channels. Best growth was on Linked-In. This is exactly what we had hoped for since we want to reach out and better connect with HCPs and other partners.
*For more information on the patient journey publication see:
https://dystonia-europe.org/2022/05/first-ever-patient-experience-map-in-cervical-dystonia-reveals-multiple-barriers/
and below
