Resources for Patients with Advanced Lung Disease

Living with advanced lung disease is challenging. Having access to information and support networks can help. 

Below are resources to information and organizations curated by our team:

• Pulmonary Hypertension Association: www.phassociation.org
• Pulmonary Fibrosis Foundation: www.pulmonaryfibrosis.org
• COPD Foundation: www.copdfoundation.org
• Asthma and Allergy Foundation of America: https://aafa.org
• Disorders associated with advanced lung diseases:
  • National Organization for Rare Disorders: https://rarediseases.org
  • National Scleroderma Foundation: https://scleroderma.org
  • Lupus Foundation of America: www.lupus.org
  • National Blood Clot Alliance: www.stoptheclot.org
  • AIDS Healthcare Foundation: www.aidshealth.org
  • American Liver Foundation: https://liverfoundation.org
  • Congenital Heart Defect Coalition: https://chdcoalition.org
• Lung transplant resources:
  • United Network for Organ Sharing: https://unos.org 
  • Lung Transplant Foundation: https://lungtransplantfoundation.org
  • 2nd Wind Lung Transplant Association: https://www.2ndwind.org
  • American Transplant Foundation: https://www.americantransplantfoundation.org
  • American Society of Transplantation Patient Resource Page: https://www.myast.org/patient-information/resources-transplant-patients
• Co-pay assistance programs resources:
  • The Assistance Fund: https://enroll.tafcares.org
  • Good Days: https://www.mygooddays.org
  • HealthWell Foundation: https://www.healthwellfoundation.org/fund/pulmonary-hypertension-medicare-access
  • PAN Foundation: https://www.panfoundation.org/disease-funds/pulmonary-hypertension
  • Patient Advocate Foundation: https://copays.org/funds/pulmonary-hypertension
• Non-medical expenses, medical travel/hospital stays, and miscellaneous resources:
  • Blue Lips Foundation: https://www.bluelipsfoundation.org/beyond-blue-lips
  • Genetic and Rare Diseases Info Center: https://rarediseases.info.nih.gov/guides/pages/118/help-with-travel-costs 
  • Team Phenomenal Hope Unmet Needs Patient Impact Fund: https://www.teamphenomenalhope.org/programs/unmet-needs-patient-impact-fund