Resources

WORLDWIDE CYSTINOSIS ORGANISATIONS

https://cystinosis.org/
https://www.cystinosisresearch.org/
https://www.cystinosis.co.za/
https://cystinose.nl/
https://cistinosis.org.mx/
https://www.cistinosi.it/
https://cystinosis-europe.eu/
https://cystinosisindia.org/
https://www.cystinose-selbsthilfe.de/
https://www.grupocistinosis.org/
https://www.cystinosis.org.uk/
https://cystinosis.ie/
https://www.raredisorders.org.nz/

FACEBOOK SUPPORT GROUPS

https://www.facebook.com/groups/461177453900910/ (Worldwide Parents Group)

https://www.facebook.com/groups/1164262997356084/ (living with Cystinosis; parents/caregivers & adults with Cystinosis)
https://www.facebook.com/groups/416132368827398/ (New Zealand)

 https://www.facebook.com/profile.php?id=100064781733937 (Australia)
https://www.facebook.com/groups/cystinosisfoundationuk/ (UK)

 https://www.facebook.com/groups/6382741905/ (CRN)

https://www.facebook.com/groups/CystinosisCommunityConnection (CRF)

 https://www.facebook.com/gscistinose.brasil (Brazil)

KIDNEY / RENAL ORGANISATIONS

https://kidney.org.au/
https://www.ksn.org.au/
https://www.renalsociety.org/
https://nephrology.edu.au/

RARE DISEASE ORGANISATIONS

https://www.rarediseaseday.org/
https://www.eurordis.org/
https://rarevoices.org.au/
https://www.raredisorders.org.nz/
https://rarediseases.org/rare-diseases/cystinosis/?filter=ovr-ds-resources
https://www.geneticalliance.org.au/
https://guard.org.au/

AUSTRALIAN ENTERAL FEEDING / TUBE FEEDING

https://wholesomeblends.com.au/
https://www.feedingtubeawareness.org/
https://www.feedingtubeawarenessweek.org/
https://www.theblendmag.com/
https://www.facebook.com/groups/195468740902987 (Aus Blended Food Group)
https://whole.net.au/
https://www.ausee.org/

METABOLIC AND LYSOSOMAL DISEASE

https://lysosomaldiseasenetwork.org/ 

https://rarediseases.org/rare-diseases/lysosomal-storage- disorders/?filter=ovr-ds-resources

NDIS & DISABILITY SERVICES

https://www.servicesaustralia.gov.au/rare-diseases?context=23021
https://www.ausdisability.com.au/
https://www.ndis.gov.au/
https://nzdsn.org.nz/ (NZ)
https://www.odi.govt.nz/nz-disability-strategy/
https://www.justbettercare.com/
https://www.benevolent.org.au/home

Helpful Links

https://academic.oup.com/ckj/article/15/9/1675/6568908 (Expert guidance on the multidisciplinary management of cystinosis in adolescent and adult patients)
https://cystinosis.org/publications/cystinosis-parent-handbook/

Australian Medication

https://www.tga.gov.au/resources/artg/60451

Acknowledgement of Country

The Australian Cystinosis Foundation acknowledges the Traditional Custodians of country throughout Australia and their connections to land, sea and community. We pay our respects to them and their cultures and elders past, present and emerging.

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