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.
- Telemedicine–Getting Care to Patients Closer to Home
- Live Better with Pulmonary Rehab
- What to do When Pulmonary Rehabilitation (PR) is Unavailable
- Pulmonary Function Testing in Children
- What is Post Intensive Care Syndrome (PICS)?
- Palliative Care for People with Respiratory Disease or Critical Illness
- Oxygen Therapy
- Oxygen Therapy for Children
- Nebulizer Breathing Treatments at Home
- What is Interstitial Lung Disease in Children?
- Managing the ICU Experience: A Proactive Guide for Patients and Families
- Decision Guide for Extracorporeal Membrane Oxygenation (ECMO) in Respiratory Failure
- COVID-19: How Do We Stay Safe?
- COVID-19 and Lung Health
- Managing Your Chronic Lung Disease During the COVID-19 Pandemic
- What Are COVID-19 Vaccines?
