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UID:pretalx-citizen-science-communication-trust-2026-GTDASK@ifkw.rz.tu-bs.d
 e
DTSTART;TZID=CET:20261005T161500
DTEND;TZID=CET:20261005T163000
DESCRIPTION:In rare disease research\, citizens living with a condition are
  often positioned as contributors of data\, yet less frequently recognised
  as producers and contributors of scientific knowledge. This raises import
 ant questions: how to ensure that research agendas are relevant for patien
 ts\, and how is trust built between those who live with a condition and th
 ose who study it? In this context\, patient organisations may act as key i
 ntermediaries\, using participatory approaches to translate lived experien
 ce into collective priorities while challenging traditional boundaries bet
 ween academia\, real-life stories and meaningful participation. \n\nSMA Eu
 rope is an umbrella organisation of 30 European patient organisations for 
 spinal muscular atrophy (SMA)\, a rare and progressive neuromuscular condi
 tion. SMA Europe drives initiatives in research\, advocacy\, evidence gene
 ration\, awareness raising\, and capacity building to represent and commun
 icate the needs of the community. \n\nOne of the key examples is the Prior
 ity Setting Partnership project\, which used the James Lind Alliance appro
 ach to identify the most pressing unanswered questions about SMA from the 
 perspective of citizens living with SMA\, their caregivers and health and 
 social care professionals. A transdisciplinary SMA expert panel subsequent
 ly translated these community-defined priorities into research areas with 
 the highest translational relevance. This initiative represents the first 
 European-wide\, community-led initiative to define research priorities in 
 SMA and reflects a growing shift toward inclusive governance in rare disea
 se research. A subsequent communications campaign\, co-created with commun
 ity stakeholders\, was then launched to raise awareness of the identified 
 research priorities across public and professional audiences\, build a fee
 dback loop with study participants\, and stimulate engagement from funders
 \, researchers\, and institutions to act on these priorities. \n\nIf citiz
 ens with rare conditions are to shape and contribute to research\, they mu
 st also be able to critically engage with it. In rare diseases\, accessibl
 e accounts of scientific progress remain limited\, and communication often
  lacks patient-driven narratives. This creates a dilemma: how can trust be
  fostered if knowledge remains unevenly distributed? How can we expect our
  citizens to truly and actively contribute to the research and science env
 ironment if we do not provide the necessary tools for them to bridge the k
 nowledge breach?\n\nTo address this challenge\, SMA Europe developed The R
 olling Story of SMA\, a participatory storytelling project that speaks of 
 the history of SMA research and its key scientific and therapeutic milesto
 nes in a lay and accessible language. Co-created with patients\, families\
 , SMA Europe funders and researchers\, the project brings together multipl
 e perspectives into a shared narrative that connects history and lived exp
 erience with scientific development and life-changing treatments that are 
 available nowadays. The video and project behind it fund a base for an ope
 n and evolving conversation about what has been already gained for all the
  citizens who live with SMA and what is yet to be achieved.\n\nThis contri
 bution grounds patient storytelling as a form of citizen science\, in whic
 h patients and patient organisations act as knowledge producers and active
  contributors. It further positions narrative as a communication tool and 
 structure that translate complex scientific evidence and data into sociall
 y meaningful and accessible knowledge. These approaches strengthen trust t
 hrough authenticity\, representation\, raising awareness and legitimacy. A
 t the same time questions about whose stories should be included\, how the
 y are curated\, and how they interact with widely established and accepted
  forms of evidence are raised for further discussion and debate.\n\nBy bri
 nging together priority setting and participatory storytelling\, SMA Europ
 e’s case study invites discussion on the role of narrative in shaping ev
 idence ecosystems. It offers a model for rare disease communities\, NGOs\,
  and scientific institutions\, while examining both the potential and boun
 daries of storytelling as a tool for citizen science and trust-building.
DTSTAMP:20260721T211300Z
LOCATION:Tagungsraum
SUMMARY:Building Trust Through Story and Active Participation: Patient Narr
 atives in Citizen Science and Rare Disease Research Communication. - Emili
 a Debska\, Federica Fontana
URL:https://ifkw.rz.tu-bs.de/citizen-science-communication-trust-2026/talk/
 GTDASK/
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