The acromegaly rare disease awareness campaign had three primary deliverables:
1. Wider population awareness: increase public knowledge about rare disease acromegaly to facilitate early diagnosis and better outcomes for patients diagnosed with acromegaly, patients living with acromegaly but are yet to receive a diagnosis due to the complexity of the rare disease, and their families.
2. Media engagement: secure top-tier earned media placements featuring real-life case studies of patients affected by rare disease acromegaly – patients including Shari Dawson and AFL hero Mark Harvey.
3. Community wellness and education event: plan and execute a community wellness and education event to bring together acromegaly patients, their families, and healthcare professionals.
Target audience: acromegaly patients, people living with acromegaly yet to receive an accurate diagnosis, health care professionals, the general public, families of acromegaly patients and their communities.
Shari Dawson
General Manager, Australian Pituitary Foundation
Acromegaly is a rare growth disease that silently affects between 715 and 3,500 Australians per year. The rare endocrine disease causes the overproduction of growth hormone in the brain’s pituitary gland, resulting in abnormal growth in adults.
Early acromegaly symptoms can include migraine, vomiting, enlarged hands and feet, gaps in between the teeth, a pronounced jawline, thickened skin, and a deepening of the voice.
Acromegaly has famously impacted Andre the Giant, actor Ted Cassidy who played Lurch from the Addams Family, and Australia’s own three-time AFL Premiership hero Mark Harvey.
The condition affects the body’s growth patterns and metabolism without initially showcasing obvious symptoms.
Execution:
We engaged patients Shari Dawson and AFL hero Mark Harvey, individuals living with acromegaly, to explore their personal journeys with the rare disease, and to develop unique and compelling case studies to communicate to health care professionals, with emphasis on allied health professionals, and the wider public.
By analysing Meltwater data, the team identified a gap in the online conversation around the rare pituitary condition. Acromegaly was rarely mentioned by Australian media outlets, with only 12 mentions in the six months prior to us beginning this project, leading us to conclude that public awareness was low. Ms Dawson and Mr Harvey’s acromegaly journeys were shared with key journalists and media outlets as genuine news angles and interviews were facilitated for feature articles in top-tier publications.
Following research into studies that yoga and movement had a multitude of physical and mental benefits for acromegaly patients, we planned and executed a community-focused wellness and education event that included expert-led sessions, focused on both physical and mental wellness, patient testimonials, and interactive workshops led by a variety of health care professionals.
Earned media:
Patient stories and acromegaly rare disease information was shared with top tier journalists and media outlets, communicating the rare patient journeys.
19 top tier media placements were secured.
All media coverage communicated patient stories living with acromegaly, and their diagnosis journeys, along with a number of the outlets highlighting the community event.
A total estimated reach of 113 million people across Australia, New Zealand, and the world, was achieved from media coverage secured. (Source: Meltwater)
Community wellness & education event:
The acromegaly awareness event element of the campaign was then planned and executed.
The Acromegaly Yoga, Health & Wellbeing Workshop was hosted in St Kilda Life Saving Club with views overlooking the ocean on November 25th 2023.
All participants, including acromegaly patients, family members of acromegaly patients, health care professionals, and the wider community, participated in a yoga class with a professional yoga teacher. The yoga session provided attendees with the opportunity to learn a new skill that could have a positive impact on their quality of life, focusing on how movement can benefit acromegaly patients.
Educational and informative talks on the rare endocrine disease were then led by:
All available Eventbrite tickets sold in advance of the Acromegaly Yoga, Health & Wellbeing Workshop and the event was seen by patients, their families and healthcare professionals as a huge success from start to finish.
Campaign outcome:
The campaign successfully raised significant awareness around rare disease acromegaly among the wider Australian population, along with relevant healthcare professionals who often play a part in the diagnosis of acromegaly.
Greater healthcare professional awareness will result in earlier diagnosis for patients who often take years to be diagnosed due to the rarity of the condition.
By sharing patient stories, and highlighting the patient’s resilience and positive outlooks, for Shari in particular despite taking almost a decade to get an eventual diagnosis, the campaign inspired patients in similar situations, providing them with hope and insight into the rare and unusual symptoms that are often attributed to acromegaly.
The campaign sparked conversations and engagement across a multitude of digital and in-person platforms, amplifying the reach and impact of the awareness campaign.
The acromegaly awareness campaign achieved significant rare disease awareness and results.
The campaign successfully raised awareness about rare disease acromegaly, along with sparking conversations about pituitary conditions among communities across Australia and beyond.
Both the successful community event and high-profile media coverage provided a platform to deliver an impactful narrative on rare diseases and the importance of awareness among both health care professionals and the general public in order to get timely diagnoses and treatment for patients.
The campaign generated meaningful results and contributed to improving the lives of both acromegaly patients, their families, and the wider community of those living with rare diseases.
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