"... caregivers have to contend with impacts on their sleep, physical and emotional health, and family and social relationships." Important insight looking at the impact of #BattenDisease and the need for support #CLN2 out just before #battenday2020 next w
RT @SproutBehaviour: Effective and engaging patient and caregiver support programmes must build on an understanding of the users unmet need…
Effective and engaging patient and caregiver support programmes must build on an understanding of the users unmet needs and experiences. #raredisease #caregiversupport #BattenDisease
Our paper highlights the need for emotional and practical support for families caring for a child with #CLN2. Many thanks to the participants and co-authors of this paper https://t.co/OKYwcfKYsk #RareDiseases #caregivers #BattenDisease #patientsupport