Anyone aware of clinical registry for cystinosis in an African country?

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Dennis Mazur

Clinical registry for cystinosis in Africa

Please let me know if these references/sites are helpful to you:

1. Cystinosis: a review | Orphanet Journal of Rare Diseases | Full Text

https://ojrd.biomedcentral.com/articles/10.1186/s13023-016-0426-y

by MA Elmonem - ‎2016 - ‎Cited by 15 - ‎Related articles

Apr 22, 2016 - Cystinosis is a systemic disease and cystine crystals, the pathologic landmark, ... Middle East and North Africa are still lacking; however, cystinosis was fairly ..... this has not been demonstrated in ERA-EDTA registries [94–97].

2. cystinosis patient resources - Cystinosis Research Foundation

https://www.cystinosisresearch.org/wp-content/uploads/2013/.../Patient-Resources.pdf

patient support program, created by Rap- tor Pharmaceuticals in ... 858-822-3747 email: [email protected] ... Cystinosis Support Group South Africa.

Dennis

Neveen A Soliman

Many thanks, appreciate it.

I am familiar with the first article since I co-authored it.

The second link should be helpful since I am looking for cystinosis patient registries in Africa.

Thanks again and best regards