A qualitative needs assessment of external communication by rare disease associations

Abstract

- Background. There is widespread acknowledgment amongst the rare disease community that effective communication strategies are lacking to explain diagnostic issues and therapeutic challenges to the public. The goal of this study was to objectively assess the communication needs of rare disease associations using validated techniques. - Methods. Sixty-minute structured interviews and objective analysis of transcribed responses were conducted and analyzed for 20 rare disease organizations. - Results. Associations uniformly agreed that effective communication was important to educate the public, advance advocacy and raise funds. However, there was no consensus as to how this should be achieved. Only seven of the 20 organizations had formal communication plans. Only few organizations had staff dedicated to external communication. - Conclusions. Strategic improvement in rare disease communication may increase the awareness of rare diseases and advance science. Communication challenges included staffing, funding, technological resources, training and expertise.