Links of Interest

Organizations:

American College of Chest Physicians

American Lung Association

American Thoracic Society

American Society of Transplantation

The International Society for Heart and Lung Transplantation

Scientific Registry of Transplant Recipients
(Designed for Patients and Health-Care Professionals – Provides center-specific volume and outcomes)

United Network for Organ Sharing

Patient Education:

“Getting a New Lung” by the American Society of Transplantation

“A Guide to Lung Transplantation” by the American College of Chest Physicians

Disease Specific Information:

Alpha 1 Association

Alpha One Foundation

Cystic Fibrosis Foundation

Cystic Fibrosis.com

EFFORTS (Emphysema Foundation for our Right To Survive)

Lymphangioleiomyomatosis (LAM) Foundation

Pulmonary Fibrosis Foundation

Coalition for Pulmonary Fibrosis

Hypertension Association

Hypertension

Pulmonary Hypertension Central

PAH

Sarcoidosis Network Association

Sarcoidosis Awareness Network

Patient Support:

One Breath at a Time

Transplant Recipients International Organization
(Designed for Patients – International organization committed to improving the quality of life for transplant candidates, recipients, their families, and the families of organ and tissue donors.)

Transplant Living

Second Wind Lung Transplant Association, Inc.
(Designed for Patients – Patient-run organization that provides information on lung transplantation for patients (and their families) who have had a transplant or who are waiting to have a transplant)

Transplant Buddies

Yahoo eGroup on Lung Transplant

Good Life Resources (Specialty Pharmacy – mail order for Transplant Medications):

We’ve Been There
(Designed for Patients (under age 35) who are on the waiting list – Interactive Web site dedicated to younger patients on the lung transplant waiting list. Visits by transplant recipients to homes of an individual on the waiting list can be arranged.)

Pre- and Post-Transplant Patient Information:

transplant information American Organ Procurement Organization

transplant information American Society of Transplantation

transplant information Gift of Life Foundation

transplant information Medscape Transplantation Homepage

transplant information National Transplant Assistance Fund

transplant information National Transplant Society

transplant information United Network for Organ Sharing

transplant information TransplantLiving.org

transplant information Breathe Deeply Support Group

transplant information Partnership for Prescription Assistance

transplant information Transplant Living Newsletter

transplant information Drug Assistance Program

transplant information Donated Dental Services

transplant information Florida Coalition on Donation

transplant information United Resource Network

transplant information Pharmacy Assistance

transplant information E-Mail teamflorida@listserv.kidney.org to receive information about Transplant Olympics

Financial and Prescription Drug Assistance:

transplant information Directory of Prescription Drug Assistance Programs
(through the Partnership for Prescription Assistance)

Manufacturer Financial Assistance

National Transplant Assistance Fund
(Designed for Patients and Case Managers – Organization whose mission is to help raise funds for transplant and catastrophic injury patients by providing support, education, and expertise)

NeedMeds.org

More information: NLA in the News