The European Medical Writers Association (EMWA) 2024 Spring conference is almost upon us.
Raquel Billiones and I will be moderating the Expert Discussion Group: Nuances of Writing for the Rare Disease Space: Experiences and Improvements.
Whether for regulatory or medical communication purposes, the challenges of writing for Rare Diseases offer a completely different writing experience. Rare diseases are, by definition, individually rare, often with a limited understanding of the condition and less investment into research compared to more common disorders.
Many rare diseases have long diagnostic delays and few treatments available. Equally, there is a greater healthcare inequity across the globe for rare diseases due to infrastructure and financial constraints. The patient advocate's voice is very loud in this community as families fight for improvements in care, funding and research. Thus, their voice is imperative to progress. As medical writers, we are the gatekeepers for progress in rare diseases, raising awareness, providing patient educational materials, and ensuring the patient advocacy voice is heard in every aspect of clinical trials.
Medical writing for rare diseases is more patient-centric than other forms of medical writing, simply because often, the patients know more about their conditions than the healthcare professionals.
For all medical writers working with rare diseases, why not sign up to join us on Wednesday afternoon (8th May) so that we can share our experiences, and identify where our profession can make a difference to those living with rare diseases.
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