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FEATURES
https://doi.org/10.1142/S0219030317000404Cited by:2 (Source: Crossref)
Abstract
Shire Championing the Cause for Patients with Rare Diseases.
ASEAN+ Rare Disease Network: Unifying Voices of Patients.
Rainbow Across Borders.
Genetic Counselling Services in Malaysia.
Keywords:
- rare diseases ,
- patients ,
- innovation ,
- pipeline ,
- Shire ,
- community partner ,
- early intervention ,
- voices ,
- Singapore Rare Disease Impact Study ,
- diagnosis ,
- parents ,
- caregivers ,
- rare disease patient support groups ,
- Pompe disease ,
- ASEAN+ Rare Disease Network ,
- advocacy ,
- Rainbow Across Borders (RAB) ,
- genetic diseases ,
- involvement ,
- genetic counsellor ,
- emotional burden ,
- financial burden ,
- support ,
- access to treatment ,
- education ,
- prevention
