Workshop

The last two decades have wit­nessed the grow­ing impor­tance of the „Rare Dis­ease” (RD) cat­e­go­ry in the con­text of nation­al health poli­cies and Glob­al Health. Lack­ing a uni­ver­sal def­i­n­i­tion, RDs are defined as con­di­tions that affect no
more than 1 in 2000 peo­ple in the EU and Aus­tralia; they affect few­er than 200,000 and 50,000 in the US and Japan respec­tive­ly. It is esti­mat­ed that some 30 mil­lion peo­ple in the EU and 263–446 mil­lion glob­al­ly live with one of the over
6000 described RDs. In a 2021 res­o­lu­tion, the Unit­ed Nations pre­sent­ed the com­plex nature of the chal­lenges peo­ple liv­ing with a D and their fam­i­lies face as being intrin­si­cal­ly linked to both human rights and to the Sustainable
Devel­op­ment Goals. The 2021 report issued by the glob­al alliance Rare Dis­ease Inter­na­tion­al iden­ti­fied ten com­mon chal­lenges and needs that impact diag­no­sis, care, and treat­ment of the RD pop­u­la­tion glob­al­ly. A sig­nif­i­cant proportion
of the list­ed chal­lenges and needs lies beyond the realm of bio­med­i­cine and life sciences.

The work­shop Rare Dis­eases, Glob­al Health, and Social Sci­ences: Coun­ter­bal­anc­ing Bio­med­ical Reduc­tion­ism aims to bring togeth­er, enhance and fur­ther devel­op social sci­ence and med­ical human­i­ties approach­es to the glob­al­iz­ing RD field by address­ing these chal­lenges and con­cerns that include social accep­tance, equal­i­ty, inclu­sion, polit­i­cal recog­ni­tion, empow­er­ment, and geo­graph­i­cal and cul­tur­al con­sid­er­a­tions. In par­tic­u­lar, the work­shop pro­pos­es to address three the­mat­ic areas that have a sig­nif­i­cant and long-term impact on both the indi­vid­ual lives of peo­ple with a RD as well as on soci­ety, health poli­cies, economies, and pol­i­tics on nation­al and glob­al lev­els. These include (a) vul­ner­a­bil­i­ties of peo­ple with RDs, (2) the patient tran­si­tion to adult­hood and aging, and (3) the judi­cial­iza­tion of health with­in the field of RDs. The work­shop will also crit­i­cal­ly engage D ini­tia­tives that orig­i­nate in and are pro­mot­ed by the West­ern world, much like Glob­al Health ini­tia­tives, which have recent­ly received ample crit­i­cism for being dri­ven by bio­med­ical reduc­tion­ism. We invite con­tri­bu­tions from schol­ars in anthro­pol­o­gy, soci­ol­o­gy, the med­ical human­i­ties, bioethics, law, and relat­ed dis­ci­plines as well as patient orga­ni­za­tion rep­re­sen­ta­tives that address the social, polit­i­cal, and eco­nom­ic con­se­quences of bio­med­ical reduc­tion­ism in the field of RDs, includ­ing the above-men­tioned topics.

The work­shop will gath­er an inter­dis­ci­pli­nary group of schol­ars and experts who are involved in research, pub­li­ca­tion, and advo­ca­cy in RDs and Glob­al Health. Con­firmed speak­ers include Wales­ka Aure­liano (Rio de Janeiro State Uni­ver­si­ty, Brasil), Gior­gio Broc­co (Uni­ver­si­ty of Vien­na, Aus­tria), Nan­cy J. Burke (UC Merced, USA), Sangee­ta Chat­too (Uni­ver­si­ty of York, UK), Pauline McCor­ma­ck (New­cas­tle Uni­ver­si­ty, UK), and Samuel Agyei Wiafe (Rare Dis­ease Ghana Initiative).

The work­shop is planned as an in-per­son event. There is no work­shop fee, how­ev­er, the costs of trav­el and
accom­mo­da­tions can­not be cov­ered by the organizers.

To apply, please send an abstract (300 words max.) and a short bio to Mal­go­rza­ta Raj­tar mrajtar@ifispan.edu.pl and
Eva-Maria Knoll eva-maria.knoll@oeaw.ac.atby Sep­tem­ber 30, 2022.

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Date: 9–11 May 2023

Venue: Brocher Foun­da­tion, Her­mance, Switzerland

Orga­niz­ers: Mal­go­rza­ta Raj­tar (Insti­tute of Phi­los­o­phy and Soci­ol­o­gy, Pol­ish Acad­e­my of Sciences)

& Eva-Maria Knoll (Insti­tute for Social Anthro­pol­o­gy, Aus­tri­an Acad­e­my of Sciences)

Abstract: The last two decades have wit­nessed the grow­ing impor­tance of the “Rare Dis­ease” (RD) cat­e­go­ry in the con­text of nation­al health poli­cies and Glob­al Health. Lack­ing a uni­ver­sal def­i­n­i­tion, RDs are defined as con­di­tions that affect no more than 1 in 2000 peo­ple in the EU and Aus­tralia; they affect few­er than 200,000 and 50,000 in the US and Japan respec­tive­ly. It is esti­mat­ed that some 30 mil­lion peo­ple in the EU and 263–446 mil­lion glob­al­ly live with one of the over 6000 described RDs. In a 2021 res­o­lu­tion, the Unit­ed Nations pre­sent­ed the com­plex nature of the chal­lenges peo­ple liv­ing with a RD and their fam­i­lies face as being intrin­si­cal­ly linked to both human rights and to the Sus­tain­able Devel­op­ment Goals. The 2021 report issued by the glob­al alliance Rare Dis­ease Inter­na­tion­al iden­ti­fied ten com­mon chal­lenges and needs that impact diag­no­sis, care, and treat­ment of the RD pop­u­la­tion glob­al­ly. A sig­nif­i­cant pro­por­tion of the list­ed chal­lenges and needs lies beyond the realm of bio­med­i­cine and life sciences.

The work­shop Rare Dis­eases, Glob­al Health, and Social Sci­ences: Coun­ter­bal­anc­ing Bio­med­ical Reduc­tion­ism aims to bring togeth­er, enhance and fur­ther devel­op social sci­ence and med­ical human­i­ties approach­es to the glob­al­iz­ing RD field by address­ing these chal­lenges and con­cerns that include social accep­tance, equal­i­ty, inclu­sion, polit­i­cal recog­ni­tion, empow­er­ment, and geo­graph­i­cal and cul­tur­al con­sid­er­a­tions. In par­tic­u­lar, the work­shop pro­pos­es to address three the­mat­ic areas that have a sig­nif­i­cant and long-term impact on both the indi­vid­ual lives of peo­ple with a RD as well as on soci­ety, health poli­cies, economies, and pol­i­tics on nation­al and glob­al lev­els. These include (a) vul­ner­a­bil­i­ties of peo­ple with RDs, (2) the patient tran­si­tion to adult­hood and aging, and (3) the judi­cial­iza­tion of health with­in the field of RDs. The work­shop will also crit­i­cal­ly engage RD ini­tia­tives that orig­i­nate in and are pro­mot­ed by the West­ern world, much like Glob­al Health ini­tia­tives, which have recent­ly received ample crit­i­cism for being dri­ven by bio­med­ical reduc­tion­ism. We invite con­tri­bu­tions from schol­ars in anthro­pol­o­gy, soci­ol­o­gy, the med­ical human­i­ties, bioethics, law, and relat­ed dis­ci­plines as well as patient orga­ni­za­tion rep­re­sen­ta­tives that address the social, polit­i­cal, and eco­nom­ic con­se­quences of bio­med­ical reduc­tion­ism in the field of RDs, includ­ing the above-men­tioned topics.

The work­shop will gath­er an inter­dis­ci­pli­nary group of schol­ars and experts who are involved in research, pub­li­ca­tion, and advo­ca­cy in RDs and Glob­al Health. Con­firmed speak­ers include Wales­ka Aure­liano (Rio de Janeiro State Uni­ver­si­ty, Brasil), Gior­gio Broc­co (Uni­ver­si­ty of Vien­na, Aus­tria), Nan­cy J. Burke (UC Merced, USA), Sangee­ta Chat­too (Uni­ver­si­ty of York, UK), Pauline McCor­ma­ck (New­cas­tle Uni­ver­si­ty, UK), and Samuel Agyei Wiafe (Rare Dis­ease Ghana Initiative).

The work­shop is planned as an in-per­son event. There is no work­shop fee, how­ev­er, the costs of trav­el and accom­mo­da­tions can­not be cov­ered by the organizers.

To apply, please send an abstract (300 words max.) and a short bio to Mał­gorza­ta Raj­tar mrajtar@ifispan.edu.pl and Eva-Maria Knoll eva-maria.knoll@oeaw.ac.at by Sep­tem­ber 30, 2022.

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