A call for global action for rare diseases in Africa

Gareth S. Baynam; Stephen Groft; Francois H. van der Westhuizen; Safiyya D. Gassman; Kelly du Plessis; Emily P. Coles; Eda Selebatso; Moses Selebatso; Boikobo Gaobinelwe; Tebogo Selebatso; Dipesalema Joel; Virginia A. Llera; Barend C. Vorster; Barbara Wuebbels; Benjamin Djoudalbaye; Christopher P. Austin; Judit Kumuthini; John Forman; Petra Kaufmann; James Chipeta; Désirée Gavhed; Annika Larsson; Maja Stojiljkovic; Ann Nordgren; Emilio J.A. Roldan; Domenica Taruscio; Durhane Wong-Rieger; Kristen Nowak; Gemma A. Bilkey; Simon Easteal; Sarah Bowdin; Juergen K.V. Reichardt; Sergi Beltran; Kenjiro Kosaki; Clara D.M. van Karnebeek; Mengchun Gong; Zhang Shuyang; Ruty Mehrian-Shai; David R. Adams; Ratna D. Puri; Feng Zhang; Nicholas Pachter; Maximilian Muenke; Christoffer Nellaker; William A. Gahl; Helene Cederroth; Stephanie Broley; Maryke Schoonen; Kym M. Boycott; Manuel Posada

doi:10.1038/s41588-019-0552-2

A call for global action for rare diseases in Africa

Gareth S. Baynam, Stephen Groft, Francois H. van der Westhuizen^*, Safiyya D. Gassman, Kelly du Plessis, Emily P. Coles, Eda Selebatso, Moses Selebatso, Boikobo Gaobinelwe, Tebogo Selebatso, Dipesalema Joel, Virginia A. Llera, Barend C. Vorster, Barbara Wuebbels, Benjamin Djoudalbaye, Christopher P. Austin, Judit Kumuthini, John Forman, Petra Kaufmann, James ChipetaDésirée Gavhed, Annika Larsson, Maja Stojiljkovic, Ann Nordgren, Emilio J.A. Roldan, Domenica Taruscio, Durhane Wong-Rieger, Kristen Nowak, Gemma A. Bilkey, Simon Easteal, Sarah Bowdin, Juergen K.V. Reichardt, Sergi Beltran, Kenjiro Kosaki, Clara D.M. van Karnebeek, Mengchun Gong, Zhang Shuyang, Ruty Mehrian-Shai, David R. Adams, Ratna D. Puri, Feng Zhang, Nicholas Pachter, Maximilian Muenke, Christoffer Nellaker, William A. Gahl, Helene Cederroth, Stephanie Broley, Maryke Schoonen, Kym M. Boycott, Manuel Posada

^*Corresponding author for this work

Research output: Contribution to journal › Comment/debate › peer-review

31 Citations (Scopus)

Abstract

The 11th International Conference on Rare Diseases and Orphan Drugs (ICORD), South Africa, included the Africa-Rare initiative launch and facilitated multi-stakeholder engagement in the challenges facing, and opportunities for, Africans living with rare diseases. The following ICORD Global Call to Action, developed in collaboration with the International Rare Diseases Research Consortium, synthesizes the outcomes of the deliberations and emphasizes the international collaborative efforts required to address the global effects of rare diseases on public health.

Original language	English
Pages (from-to)	21-26
Number of pages	6
Journal	Nature Genetics
Volume	52
Issue number	1
DOIs	https://doi.org/10.1038/s41588-019-0552-2
Publication status	Published - 1 Jan 2020

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Baynam, G. S., Groft, S., van der Westhuizen, F. H., Gassman, S. D., du Plessis, K., Coles, E. P., Selebatso, E., Selebatso, M., Gaobinelwe, B., Selebatso, T., Joel, D., Llera, V. A., Vorster, B. C., Wuebbels, B., Djoudalbaye, B., Austin, C. P., Kumuthini, J., Forman, J., Kaufmann, P., ... Posada, M. (2020). A call for global action for rare diseases in Africa. Nature Genetics, 52(1), 21-26. https://doi.org/10.1038/s41588-019-0552-2

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abstract = "The 11th International Conference on Rare Diseases and Orphan Drugs (ICORD), South Africa, included the Africa-Rare initiative launch and facilitated multi-stakeholder engagement in the challenges facing, and opportunities for, Africans living with rare diseases. The following ICORD Global Call to Action, developed in collaboration with the International Rare Diseases Research Consortium, synthesizes the outcomes of the deliberations and emphasizes the international collaborative efforts required to address the global effects of rare diseases on public health.",

author = "Baynam, {Gareth S.} and Stephen Groft and {van der Westhuizen}, {Francois H.} and Gassman, {Safiyya D.} and {du Plessis}, Kelly and Coles, {Emily P.} and Eda Selebatso and Moses Selebatso and Boikobo Gaobinelwe and Tebogo Selebatso and Dipesalema Joel and Llera, {Virginia A.} and Vorster, {Barend C.} and Barbara Wuebbels and Benjamin Djoudalbaye and Austin, {Christopher P.} and Judit Kumuthini and John Forman and Petra Kaufmann and James Chipeta and D{\'e}sir{\'e}e Gavhed and Annika Larsson and Maja Stojiljkovic and Ann Nordgren and Roldan, {Emilio J.A.} and Domenica Taruscio and Durhane Wong-Rieger and Kristen Nowak and Bilkey, {Gemma A.} and Simon Easteal and Sarah Bowdin and Reichardt, {Juergen K.V.} and Sergi Beltran and Kenjiro Kosaki and {van Karnebeek}, {Clara D.M.} and Mengchun Gong and Zhang Shuyang and Ruty Mehrian-Shai and Adams, {David R.} and Puri, {Ratna D.} and Feng Zhang and Nicholas Pachter and Maximilian Muenke and Christoffer Nellaker and Gahl, {William A.} and Helene Cederroth and Stephanie Broley and Maryke Schoonen and Boycott, {Kym M.} and Manuel Posada",

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Baynam, GS, Groft, S, van der Westhuizen, FH, Gassman, SD, du Plessis, K, Coles, EP, Selebatso, E, Selebatso, M, Gaobinelwe, B, Selebatso, T, Joel, D, Llera, VA, Vorster, BC, Wuebbels, B, Djoudalbaye, B, Austin, CP, Kumuthini, J, Forman, J, Kaufmann, P, Chipeta, J, Gavhed, D, Larsson, A, Stojiljkovic, M, Nordgren, A, Roldan, EJA, Taruscio, D, Wong-Rieger, D, Nowak, K, Bilkey, GA, Easteal, S, Bowdin, S, Reichardt, JKV, Beltran, S, Kosaki, K, van Karnebeek, CDM, Gong, M, Shuyang, Z, Mehrian-Shai, R, Adams, DR, Puri, RD, Zhang, F, Pachter, N, Muenke, M, Nellaker, C, Gahl, WA, Cederroth, H, Broley, S, Schoonen, M, Boycott, KM & Posada, M 2020, 'A call for global action for rare diseases in Africa', Nature Genetics, vol. 52, no. 1, pp. 21-26. https://doi.org/10.1038/s41588-019-0552-2

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AU - Baynam, Gareth S.

AU - Groft, Stephen

AU - van der Westhuizen, Francois H.

AU - Gassman, Safiyya D.

AU - du Plessis, Kelly

AU - Coles, Emily P.

AU - Selebatso, Eda

AU - Selebatso, Moses

AU - Gaobinelwe, Boikobo

AU - Selebatso, Tebogo

AU - Joel, Dipesalema

AU - Llera, Virginia A.

AU - Vorster, Barend C.

AU - Wuebbels, Barbara

AU - Djoudalbaye, Benjamin

AU - Austin, Christopher P.

AU - Kumuthini, Judit

AU - Forman, John

AU - Kaufmann, Petra

AU - Chipeta, James

AU - Gavhed, Désirée

AU - Larsson, Annika

AU - Stojiljkovic, Maja

AU - Nordgren, Ann

AU - Roldan, Emilio J.A.

AU - Taruscio, Domenica

AU - Wong-Rieger, Durhane

AU - Nowak, Kristen

AU - Bilkey, Gemma A.

AU - Easteal, Simon

AU - Bowdin, Sarah

AU - Reichardt, Juergen K.V.

AU - Beltran, Sergi

AU - Kosaki, Kenjiro

AU - van Karnebeek, Clara D.M.

AU - Gong, Mengchun

AU - Shuyang, Zhang

AU - Mehrian-Shai, Ruty

AU - Adams, David R.

AU - Puri, Ratna D.

AU - Zhang, Feng

AU - Pachter, Nicholas

AU - Muenke, Maximilian

AU - Nellaker, Christoffer

AU - Gahl, William A.

AU - Cederroth, Helene

AU - Broley, Stephanie

AU - Schoonen, Maryke

AU - Boycott, Kym M.

AU - Posada, Manuel

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AB - The 11th International Conference on Rare Diseases and Orphan Drugs (ICORD), South Africa, included the Africa-Rare initiative launch and facilitated multi-stakeholder engagement in the challenges facing, and opportunities for, Africans living with rare diseases. The following ICORD Global Call to Action, developed in collaboration with the International Rare Diseases Research Consortium, synthesizes the outcomes of the deliberations and emphasizes the international collaborative efforts required to address the global effects of rare diseases on public health.

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U2 - 10.1038/s41588-019-0552-2

DO - 10.1038/s41588-019-0552-2

M3 - Comment/debate

SN - 1061-4036

VL - 52

SP - 21

EP - 26

JO - Nature Genetics

JF - Nature Genetics

IS - 1

ER -

A call for global action for rare diseases in Africa

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