Caregivers and Caregiving

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Information for Patients



lung Information for Patients


TSC Navigator

The TSC Alliance® recently debuted its newest web-based resource – TSC Navigator. TSC Navigator is an easy-to-use, interactive online tool to help guide individuals and families through the complexities of tuberous sclerosis complex (TSC) across the lifespan, proactively manage their care and live their fullest lives.


Cystic Fibrosis Research Institute – Support for Caregivers

The landmark TIDES Study (Quittner, et al, 2014), found rates of depression and anxiety among CF community members to be two to three times higher than those of the general population. Those with the highest rates of anxiety were mothers of children with cystic fibrosis. Maternal depression has been shown to impact the mental health of children as well as adherence to children’s medical regimen. The Cystic Fibrosis Research Institute provides support to caregivers through:

  • Monthly online support groups;
  • A biannual retreat for mothers of children and adults with CF;
  • Online Mindfulness and Wellness classes;
  • Financial support for counseling services
  • Educational resources – from written materials to regular podcasts


Patient Voices 10: Caregiving Ecosystem Stories of Advocacy from Patients and their Allies


ATS Patient Information Series

The ATS Patient Information Series is a public service of the American Thoracic Society and its journal the AJRCCM (www.atsjournals.org). The information appearing in this series is for educational purposes only and should not be used as a substitute for the medical advice of one's personal health care provider.