General Web Resources for Patients

Two smiling women in a parkBrowse these web resources to learn more about pulmonary hypertension and related topics.

PH Information
Advocacy
Clinical Trials
Emergency Response
Insurance
Medication
Oxygen
Transplant
Travel

also see Caregiver Resources

Pulmonary Hypertension Information

Expert Consensus Document on Pulmonary Hypertension (2009) (PDF), produced through a collaborative effort between the American College of Cardiology, the American Thoracic Society and PHA

Know Your PH offers information about the diagnosis, evaluation, and treatment of PH

Pulmonary Hypertension Fact Sheet from the Centers for Disease Control (CDC)

Pulmonary hypertension information from Mayo Clinic, Medline Plus, NHLBI Pulmonary and AHA.

Advocacy

ADA.gov is the U.S. Department of Justice’s online guide to the Americans with Disabilities Act.

Centers for Disease Control and Prevention maintain several departments concerned with the well-being among people of all ages with disabilities, working to create the expertise, information, and tools that people and communities need to protect their health.

The Disability Law Handbook (PDF) includes an overview of disability rights and information about applying the Americans with Disabilities Act to various aspects of your life.

Disability.gov is the federal web resource providing access to disability-related information and resources on health, housing, employment, education and more.

The Equal Employment Opportunity Commission accepts complaints against employers who have violated provisions of the Americans with Disabilities Act.

Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

Thomas.gov is the Library of Congress’s database of federal legislative information. Use this site to find current and past bills, public laws and more.

Clinical Trials

Clinicaltrials.gov is a registry of federally and privately supported clinical trials in the United States and around the world.

CenterWatch World provides international listings of ongoing clinical trials and profiles of research centers and clinical trials service providers.

Emergency Response

MedicAlert Foundation is an emergency medical information service, backed by a 24-hour Emergency Response Center. PH patients are eligible for a $10 discount off MedicAlert Advantage membership by mentioning PHA's discount code, 5962. Visit them online or call their toll-free number: 1-888-633-4298.

Insurance

Visit the Insurance Resources page.

Medication

The U.S. Food & Drug Administration (FDA) is responsible for protecting the public health by assuring the safety, efficacy, and security of drugs, biological products and medical devices. The FDA is also responsible for advancing the public health by helping to speed innovations that make medicines and foods more effective, safer, and more affordable; and helping the public get the accurate, science-based information they need to use medicines and foods to improve their health.

MedWatch is an FDA Safety Information and Adverse Event Reporting Program. This is the FDA gateway for finding clinically important safety information and reporting serious problems with human medical products.

Visit our list of Pharmaceutical and Specialty Pharmacy Companies for links to more information on PH-specific treatments.

Oxygen

Portable Oxygen: A User’s Perspective provides information collected from distributers, producers and users to help patients and caregivers understand portable oxygen systems.

The National Home Oxygen Patient's Association advocates for and provides information to people who require supplementary oxygen on a regular basis.

Oxy Couture designs fashionable nasal cannula covers in many fabrics, patterns and styles to prevent irritation and break down of skin due to wearing oxygen for prolonged periods of time.

Portable oxygen concentrator supplier websites:


Transplant

Visit the Tranplant Resources page.

Travel

Air Charity Network (ACN), provides access for people in need seeking free air transportation to specialized health care facilities or distant destinations due to family, community or national crisis.

Air Compassion America is a nonprofit patient advocacy/assistance organization established to help locate and coordinate bed-to-bed air ambulance service.

Angel Bus is a nonprofit corporation that utilizes motor coaches and volunteer drivers to provide non-emergency long-distance ground transportation to patients in need.

Angel Flight is a program that helps arrange free flights for people needing medical care.

Federal Aviation Administration’s Resources for Passengers offers general traveling tips for all passengers.

International Association for Medical Assistance to Travelers provides travel health advice, and coordinates an international network of qualified medical practitioners to assist travelers in need of emergency medical care during their trip.

Mercy Medical Airlift works to ensure that no needy patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical air transportation.

Miracle Flights for Kids is a leading nonprofit charitable flight organization, helping families overcome financial obstacles and access the proper medical care and second opinions for their seriously ill children.

National Patient Travel Center (NPTC) facilitates patient access to appropriate charitable medical air transportation resources in the United States. The NPTC also has the means for bringing ambulatory outpatients from many overseas locations to the United States.

The Transportation Security Administration (TSA) is responsible for security of the nation's transportation systems. They oversee security for the highways, railroads, buses, mass transit systems, ports and the 450 U.S. airports.

TSA’s Travelers with Disabilities and Medical Conditions section provides information for patients traveling with oxygen.

Travel Assistance International is a membership organization that offers travelers comprehensive travel services including emergency protection when they are 100 miles or more away from home. TAI is the oldest organization of its type in the United States.

 

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
Webmaster@PHAssociation.org
    Privacy Policy   Virtual Tour of Website    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.® | © 2014 Pulmonary Hypertension Association. All Rights Reserved.

NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.