The Pulmonary Hypertension Association (PHA) is a nonprofit membership
organization that provides a community of hope through mutual
support, medical and public education, and research. Beginning
in 1990, three patients asked the National Organization for Rare
Disorders (NORD) to help them locate other patients with PH. From
its humble beginnings around a "kitchen table," PHA has grown
to incorporate over 6,000 members. In May of 1990, PHA's first
newsletter, Pathlight, was created to serve the PH Community with
timely and relevant news. PHA currently produces tow unique newsletters
mailed to all PHA members, as well as an electronic newsletter,
informing them about organizational activities, medical developments,
and other news affecting the PH community. PHA offers online tools
at www.phassociation.org
to connect people through messages boards and provide information
and education.
PSI ACCESS offers representation to claimants with pulmonary hypertension
who have applied for disability benefits from the Social Security
Administration. In addition, PSI ACCESS staff members help explain
benefit and entitlement options under Social Security Disability,
Supplemental Security Income, Medicare, Medicaid, COBRA, HIPAA,
FMLA, and various health care coverage alternatives provided by
each state. PSI ACCESS also engages in a range of activities to educate
and advocate on behalf of the pulmonary hypertension community.
All PSI ACCESS services are offered at no cost. You can call them
toll-free at 888-700-7010 for answers to your questions.
Caring Voice Coalition
The Caring Voice Coalition serves the comprehensive needs of individuals affected by serious and chronic disorders, through collaborative efforts and partnerships with organizations established to serve those patient populations. They have programs to help patients with insurance reimbursement, financial assistance, patient support services and public advocacy.
NeedyMeds
NeedyMeds is a nonprofit organization that helps patients who cannot afford medication or healthcare costs by connecting them to Patient Assistance Programs, government assistance programs, free clinics and other patient advocacy organizations that provide financial assistance. All information is free, easy to access, and updated regularly.
The NeedyMeds PH Resource Page is a resource page tailored specifically to pulmonary hypertension patients. It includes an overview of PH, a comprehensive list of FDA-approved treatments and their respective Patient Assistance Programs, links to other patient advocacy organizations that work with the PH community and links to important pages on PHA’s website.
Patient Advocate Foundation
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
A company sponsored program to assist patients who are either
low-income uninsured or in special circumstances patients who
are underinsured and lack the financial resources to pay for Remodulin
therapy with Pulmonary Arterial Hypertension - "PAH" (based on
WHO and/or NYHA Heart Failure Classification) gain access to no-cost
Remodulin drug therapy. The program is currently available only
to patients residing in the United States and under the direct
care of a U.S. licensed physician with an approved PAH diagnosis.
This resource was developed in 2004. Some of the content may be out of date or no longer relevant. PHA is working to update and re-organize this guide. We apologize for any inconvenience.
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