Disease Awareness

Multi-stakeholder Rare Disease Awareness and Dialogue (Santhera)

Challenge
We were asked to help raise awareness (with the general public patients, HCPs and industry) of the rare disease therapy areas within which the client works

  • To work across two different therapy areas, Duchenne Muscular Dystrophy (DMD) and Leber’s Hereditary Optic Neuropathy (LHON) – each with a different core issue
  • For DMD the condition is well known, and both the treatment options and patient prognosis have improved drastically in recent times, so patient and HCP awareness needed adjusting to align with the new potential outcomes
  • LHON required a different approach as awareness of the condition is low and it is frequently mis-diagnosed. Content deliberately focused on patient stories including symptoms and diagnosis as well as pathway and outcomes to aid HCP and patient awareness
  • An aligned thought leadership programme was also created for the client to position and reinforce its patient centric credentials

Solution

  • A dedicated ‘disease spotlight’ content hub within pharmaphorum focused on each therapy area
  • Populated with new pharmaphorum generated content and existing client assets focusing on real-life patient stories and outcomes
  • Multi-strand dissemination timed to link with major global congresses and awareness days/events
  • Content was shaped to be compliant for all audiences. A unique digital marketing approach was created for each therapy area to ensure accurate targeting

Results

  • Over 6,000 views from 4,000 stakeholders in 2 weeks
  • Average time on page over 90 seconds
  • Programme extended from one to both core therapy areas within which the client works
  • Creation of more than 20 pieces of unique content across LHON and DMD – with a strategic publishing plan utilising disease awareness events for additional amplification
  • At the half way (6-month stage) the work has achieved in excess of 100,000 page views from almost 70,000 unique users – and a sustained average time on page for the content of over 1.5 minutes
  • Since the programme started there have been numerous requests from KOLs to use the content within their own networks – resulting in some pieces being translated into multiple languages
  • The success and impact has been such that the programme has been extended into 2019

Example article: Read article

Santhera Disease spotlight: LHON smart phone view
Santhera Disease spotlight: LHON smart phone view
Santhera LHON pharmaphorum media website
Santhera LHON in the family: living under the spectre of an hereditary eye disease smart phone view
Santhera LHON in the family: living under the spectre of an hereditary eye disease smart phone view

"Looks great! Thanks so much for a great article!!!"

Head of Patient Advocacy US

"Our work with pharmaphorum is being widely acknowledged and recognised."

Head of Patient Advocacy Europe

More work we have produced