Assemblages of Rare Diseases

Uczestnictwo w warsztatach możliwe jest jedynie o wcześniejszej rejestracji: https://rdworkshop.ifispan.pl/registration/

Program

Thursday, March 10^th, 2022

9:50 Opening

10:00-11:30 Session 1: Care in rare diseases. Chair: Małgorzata Rajtar

• Karoliina Snell, Roosa Harmo & Kirmo Wartiovaara (University of Helsinki Finland): Entanglements of care, hope and life – Rare disease patients expectations about clinical gene editing
• Ritti Soncco (University of Edinburgh, UK): “You’re Entering Our World Now”: Lyme disease, Crip Emotional Intelligence, and Post-Pandemic Care Work
• Magdalena Wałachowska (Maria Grzegorzewska University, Poland): Quality of life with livedo vasculopathy – an individual case study

11:30-11:45 Coffee/Tea break

11:45-1:15 Session 2: Production of knowledge and knowledge practices in rare diseases, part 1. Chair: Filip Rogalski

• Paul Martin (University of Sheffield, UK): From the margins to the mainstream: the changing production of knowledge about rare diseases
• Michał M. Skoczylas (Pomeranian Medical University in Szczecin, Poland): Photographic illustrations and X-ray pictures in descriptions of rare diseases in the exemplary Danish and Polish medical literature
• Jan Domaradzki (Poznan University of Medical Sciences, Poland): Treating rare diseases with the movies: What can cinema do to enhance public understanding of rare genetic diseases?

1:15-2:00 Lunch

2:00-3:30 Session 3: Production of knowledge and knowledge practices in rare diseases, part 2. Chair: Filip Rogalski

• Magdalena Radkowska-Walkowicz (University of Warsaw, Poland): Producing and managing knowledge in a rare disease. The case of Turner Syndrome
• Lena Gunnarsson (Örebro University, Sweden) & Maria Wemrell (Lund University, Sweden): Between the scientific and the alternative: women’s claims about copper toxicity caused by IUD use
• Manuela R Cirigliano & Maria de Costa (State University of Campinas (SP/Brazil)): The Brazilian production of knowledge about rare diseases: actors, institutions, motivations and barriers

3:30-3:45 Coffee/tea break

3:45-5:45 Session 4: Biosocialities, patient organizations, and activism in the area of rare diseases. Chair: Małgorzata Rajtar

• Conor Douglas (York University, Canada): Social Pharmaceutical Innovation for Rare Diseases: Towards a Conceptual Definition and Research Program
• Maria Berghs (De Montfort University, UK), Bassey Ebenso (Leeds University, UK) & Bola Ola (Lagos State University, Nigeria): “You can’t use this to discriminate against us, nor will you use it to deny us healthcare” – exclusion of carriers of sickle cell disease from healthcare who experience symptoms

• Jacquelyne Luce (Mount Holyoke College, USA): Time, Travel, and Coincidence:  Attending to “Diagnostic Moments” in Rare Disease Life Narratives
• Tomasz Grybek & Małgorzata Z. Wisniewska (University of Gdańsk, Poland): Evaluation of patient engagement (PE) using PCORI Engagement Rubric

6:00: Keynote: Duana Fullwiley (Stanford University, USA): Refusing the Separate Self: Rewriting Sickle Cell Futures in Dakar

Friday, March 11^th, 2022

9:00-10:30 Session 5: Imagined and abandoned futures, part 1. Chair: Filip Rogalski

• Janneke M.L. Kuiper (KU Leuven, Belgium): The resonance of the promises of next generation sequencing in clinical genetic practice and everyday life
• Pauline Herbst (University of Auckland, New Zealand): Horizoning experts: rare disease, food security and rapid change
• Nicoletta Diasio & Eva Laiacona (University of Strasbourg, France): Uncertainties, imagined futures and regimes of temporality among women with Turner syndrome

10:30-10:45 Coffee/tea break

10:45-12:15 Session 6: Imagined and abandoned futures, part 2. Chair: Filip Rogalski

• Maria Berghs (De Montfort University, UK), Bassey Ebenso (Leeds University, UK), Bola Ola (Lagos State University, Nigeria) & Anna Cronin-Chavez, London School of Hygiene and Tropical Medicine, UK): The Futures of Biosocial Models of Carriership and Sociology of Cures: Sickle Cell, Thalassaemia and Genomic Frontiers 
• Jin Ding (University of Sheffield, UK): A new model of orphan drug development: AI, drug repurposing and patient groups
• Waleska Aureliano (State University of Rio de Janeiro, Brazil), Jociara Alves Nóbrega (Federal University of Rio Grande do Norte, Brazil), Everson Fernandes Pereira (Federal University of Rio Grande do Sul, Brazil) & Luiza Nepomuceno Muniz (State University of Rio de Janeiro, Brazil): The Politics of Inheritance: trajectories of families affected by rare hereditary diseases in Brazil

12:15-1:00 Lunch

1:00-3:00 Session 7: Rare diseases in health policies and public health. Chair: Małgorzata Rajtar

• Sangeeta Chattoo (University of York, UK): The mutability of the “Rare”: the politics of common inherited disorders in India today
• Eva-Maria Knoll (Institute for Social Anthropology, Austrian Academy of Sciences, Austria): Registering Remoteness: Haemoglobinopathies in Austria
• Nicolas Schongut-Grollmus (Universidad Alberto Hurtado, Chile): Health decisions in Rare Diseases: dispositional approaches for new politics of evidence
• Katarzyna E. Król & Jan Frydrych (Institute of Philosophy and Sociology, Polish Academy of Sciences & University of Warsaw, Poland): TBA

3:00-3:15 Coffee/tea break

3:15-4:45 Session 8: Bioethics and rare diseases. Chair: Małgorzata Rajtar

• Stefan Reinsch (University Children’s Hospital Neuruppin & Centre of Health Service Research, Brandenburg Medical School -Theodor Fontane, Germany): A life worth living: Identification, reproduction and expanded genetic testing in a rare chronic illness.
• Juliana Manzoni Cavalcanti (São Paulo University, Brazil): Reinforcing democratic ideologies and policies in a Global Era: a history of the Brazilian cooperation effort in Africa to spread internationally primary health care to sickle cell disease, 2006-2010
• Daniel Navon (UC San Diego, USA) & Gareth Thomas (Cardiff University, UK): Our Uncertain Eugenics: Rare Genetic Disorders in the Age of Non-Invasive Prenatal Screening

5:30: Keynote: Mette Nordahl Svendsen, Laura Emdal Navne (University of Copenhagen, Denmark): De Novo Kin: sharing data, shielding persons, and forging relatedness in precision medicine

Final discussion and closure of the workshop

This workshop will be organized in hybrid mode (in-person and online).

Venue: Institute of Philosophy & Sociology PAS, Nowy Świat 72, 00-330 Warsaw, Rm. 268

More information at: https://rdworkshop.ifispan.pl/

Workshop organizers: Rare Disease Social Research Center (http://rdsrc.ifispan.pl/en/)

Organizatorzy:

• Małgorzata Rajtar, RDSRC/Institute of Philosophy and Sociology PAS
• Jan Frydrych, RDSRC and University of Warsaw
• Katarzyna E. Król, GSSR, RDSRC/Institute of Philosophy and Sociology PAS
• Filip Rogalski, RDSRC/Institute of Philosophy and Sociology PAS

classic-editor-remember:

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