CRN 2023 Family Conference – Poster Session

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Researchers, clinicians, industry and advocacy representatives attending CRN Nashville have been invited to exhibit research findings, treatment breakthroughs, and advocacy group updates through our poster sessions. 

To preview abstracts from the 2023 Poster Session Participants, click the corresponding link(s) below.

  1. ECYSCO : A European Cohort dedicated to cystinosis, A Servais, K Bramki, M Greco, E Levtchenko, G Ariceta, J Hogan, A Bertholet-Thomas, F Emma, R Novo, S Lemoine, R Kormann, K Hohenfellner, S Arshad, S Gueguen, P Niaudet, and the RaDiCo team
  2. CTNS mRNA as a potential treatment for nephropathic cystinosis, Tjessa Bondue, Sante Princiero Berlingerio, Florian Siegerist, Elena Sendino-Garví, Maximilian Schindler, Sara Cairoli, Bianca Maria Goffredo, Fanny Oliveira Arcolino, Jürgen Dieker, Manoe Janssen, Nicole Endlich, Roland Brock, Rik Gijsbers, Lambertus van den Heuvel, Elena Levtchenko
  3. Adult Leadership Advisory Board (ALAB), Chairperson: Jana Healy, Co-chair: Steve Schleuder, ALAB CRN representative: Sara Healy, Secretary: Christina Morris, Katie Morrison, Briana Dundon, Brian Ensor
  4. Cystinosis Network Europe Worldwide Cystinosis Community Advisory Board, Denise Dunne, Anne Marie O’Dowd 
  5. Lifecourse Journey in Cystinosis, Marcela Del Rio, Nicole Hayde, Walkiris Cruz-Perez, Maya Doyle, Tomas Kiss Farengo, Patricia Flynn, Frederick Kaskel 
  6. Addressing Challenges in the Diagnosis and Management of a Rare Disease through Interprofessional Education, Ron Helderman, Maya Doyle, Adam Weinstein, Carolyn Macica
  7. Raregiver’s Journey Map, Maya Doyle
  8. Targeting membrane lipid peroxidation rescues podocyte dysfunction in cystinosis, Sante Princiero Berlingerio, Tjessa Bondue, Sarah Tassinari, Angela Ferrulli, Marc Fransen, Sara Cairoli, Bianca Goffredo, Fanny Oliveira Arcolino, Benedetta Bussolati, Lambertus van den Heuvel and Elena Levtchenko
  9. Development of a patient-reported outcome measure to assess health-related quality of life of children, adolescents, and young adults with cystinosis – QUALIFY-US, Stefanie Witt, Isabell Suck, Katharina Hohenfellner, Julia Quitmann
  10. Synthesis and Evaluation of two new prodrugs for the Treatment of Nephropathic Cystinosis, E. Hector, G.M. Wall and D. Cairns
  11. Usability Study of a new bottle for Cystaran® Eye Drops in Cystinosis Subjects currently on eyedrop therapy for Corneal Cystine Crystal Accumulation, Eileen Wall