1. Parenting stress among caregivers of children with chronic illness: a systematic review;Journal of pediatric psychology,2013
2. Eurordis. Juggling care and daily life: the balancing act of the rare disease community. 2017. Accessed from: https://www.eurordis.org/publication/juggling-care-and-daily-life-balancing-act-rare-disease-community.
3. Rare Disease UK. Living with a rare condition: The effect on mental health. 2018a. Accessed from: https://www.raredisease.org.uk/our-work/living-with-a-rare-condition-the-effect-on-mental-health-2018/.
4. The All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed conditions Leaving no one behind: why England needs an implementation plan for the UK Strategy for Rare diseases; 2017. Accessed from: http://www.raredisease.org.uk/our-work/why-england-needs-an-implementation-plan-for-the-uk-strategy-for-rare-diseases-2017/.