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Themes that emerged from participant narratives.
| Themes | Subthemes |
|---|---|
| 3.1. Essential health resources | 3.1.1. The genetic diagnosis 3.1.2. The primary care 3.1.3. Specialized hospital care 3.1.4. Treatment and care |
| 3.2. Bureaucracy and social care | 3.2.1. Fighting bureaucracy 3.2.2. Privatization of social care |
| 3.3. Time management constraints | 3.3.1. Immediate time 3.3.2. Scheduled time |
