World Orphan Drug Congress USA 2016
community download

[Whitepaper] Unique Patient Challenges & Support Solutions in Rare Disease

Atlantis Healthcare- Adherence Research


Living with any chronic health condition can be demanding, but rare diseases bring a unique set of challenges for patients. These can range from diagnosis difficulties to limited information and support, a lack of knowledge – even within medical services – and social stigma. Such challenges negatively impact patients and carers – preventing the best possible health outcomes from being achieved.


To better understand the unmet support needs of such patients along with the solutions to address these, we asked people who have been diagnosed with a rare disease to share their stories, interviewed a pharmaceutical executive and health psychology researcher and reviewed the most recent and relevant adherence and self-management research in rare disease.


Download this whitepaper for:

  • Patient stories
  • Health psychology insights
  • Pharma insights
  • Predictors of non-adherence
  • Interventions to improve adherence
  • Clinical literature overview

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