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Pulmonary Hypertension Association

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Nonprofit Overview

Causes: Health, Heart & Circulatory System Diseases & Disorders, Lung Diseases, Specifically Named Diseases

Mission: The mission of the Pulmonary Hypertension Association (PHA) is to find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, research, advocacy and awareness.

Target demographics: Pulmonary hypertension patients, their caregivers and family, and the medical professionals who treat them.

Programs: Patient services and education; medical awareness; educational support resources via patient telephone helpline; over 200 support groups, newsletters, brochures, and a website. Pha provides outreach programs at the local and national level.

research - pha provides peer-reviewed grant awards for ph research through two programs. The partnership with nih/nhlbi leverages additional funds for research.

Community Stories

36 Stories from Volunteers, Donors & Supporters

1 Jhenna P.

Volunteer

Rating: 5

A wonderful Nonprofit organization that provides support, research and hope for patients with PAH.

1

Volunteer

Rating: 5

In 07' i was diagnosed with IPAH, and i wasn't immediately given info on PHA by my doctor. Im not sure why, but within myself i found a thirst for knowledge than what i was given by him. Yes, i trusted him, he was known as one of founders of Letairis, so honestly i had no choice but to trust he was on top of things. But with a terminal illness comes a kind of grief that a doctor can't help us with, only being with other PHers that are going through what we are experiencing will give us the nurturing and understanding that we need and crave. So i looked online through several sites, until i came across PHA, and it was mind blowing, i had no clue there was so many of us, i didn't immediately seek out groups, but i gathered as much inspiration from the site that i could until there was no more to read, so my next choice was getting involved with PHA groups. And over the course of a couple of years ive come to realize that my life would not be complete if i did not have my PHriends to rely on, because that's what PHA gives us, a sense of unity. Thank you PHA for bringing us together

Board Member

Rating: 5

PHA is a great organization. It has been a life saver for me. I found PHA on-line many years ago and I was surprised at the resources available for patients. Today there are more resources and opportunities for patients like myself to learn,get involved and help themselves as well as others. Thank you PHA !

Volunteer

Rating: 5

PHA is literally a life saver. PHA has information, education, resources and support for not only PH patients, but for caregivers and medical professionals. They are on top and a part of the latest research and clinical trials. The staff works endlessly to provide hope and to find a cure.

1

Volunteer

Rating: 5

I have PAH, my husband PH. I am the support group leader for Las Vegas, NV. The PHA has been my go to for everything. I trust them for what is new in the field, finding PH doctors, Mentoring and just general help in knowledge for this disease. I am honored to be a support group leader for them and appreciate all the work they are doing to find a cure for this disease. It is a fantastic community of workers all helping one another. PHA You Rock!!!!!

Sally61

Board Member

Rating: 5

PHA and I have the same birthday of sorts _ 1990 I was diagnosed with ph _ there were no known treatments _ found pha in 1991 and I have been so thankful! Support groups in almost every state, conferences every two years and so much support ! Thanks to PHA!

1 Barbara208

General Member of the Public

Rating: 5

I don't know if I'd be as positive as I am with the diagnosis I received 12 years ago without the backing of the Pulmonary Hypertension Association! They even helped me start a support group here in Memphis so I could reach out to others who are afflicted with this devistating disease so they don't feel alone in this PHight. They support me & my group still today.
Through a grant I received from PHA, I was able to raise awareness of Pulmonary Hypertension as it is such a misdiagnosed & undignosed disease and the public must be aware of this disease.
With all the research they are able to commission, new drugs are being FDA approved moreso than ever before. Everyone that works there, volunteers there or interns there are very compassionate & PHights our phight on a daily basis for us PHers. Thank you, Pulmonary Hypertension Association for being you!

Volunteer

Rating: 5

PHA has empowered me with hope and the tools to help other PHers. They work tirelessly to help the pulmonary hypertension community.

1 Patricia128

Client Served

Rating: 5

Great organization. They helped me accept my PH and gave me tips to deal with it. The people who work there are AWESOME!!!! I really appreciate PHA!! Thank you for all your hard work and the materials you provide as well as information and support! You guys ROCK!!!

2 Mike141

Volunteer

Rating: 5

for me PHA has help put my mind at ease. when I found out I had PAH, I went to some other outdated sites. after reading, my first thoughts were that my life had come to an end. not until I discovered PHA, and learned up to date info and the truth of my disease was i able to relax a little. and they were right. I'm still alive, doing better than before and that was over 2 years ago. thanks

2

Client Served

Rating: 5

Awesome resource for patients, caregivers and family!

3 Christopher61

Volunteer

Rating: 5

PHA is a valuable resource for care -givers of people suffering from PH. They provide information on everything from helping you be prepared for air travel to preserving your energy for daily activities.

3

Professional with expertise in this field

Rating: 5

PHA is a great resource to patients, families, and caregivers! Dedicated to finding a cure!!

2 Kevin119

Client Served

Rating: 5

Best ever! PHA has helped me since 2008 and the conferences are awesome.....

2

Client Served

Rating: 5

PHA is a powerhouse of help, information, and hope for people like me who have pulmonary hypertension. Their website is not only an antidote to the old outdated information on the internet about this disorder, but a central source for information about centers of excellence in PH, doctors who specialize in treating PH, support groups, public awareness efforts, and the latest medical information for both patients and professionals related to PH. They also are a critical partner in the vibrant field of PH medical research. I am so grateful that I found their website some months after I was diagnosed--the information I found there gave me new hope for dealing with this illness. Furthermore, they have given me the opportunity to volunteer as a web chat host, where I can meet and talk to others online with this rare disease. It helps to know that I am not battling this disease alone.

2

Professional with expertise in this field

Rating: 5

The Pulmonary Hypertension Association provides so much to patients and the medical community - from knowledge and support and connections, to advocacy for the patient community - they provide so much. But most of all, more than these fantastic services, they provide HOPE.
Thank you, PHA, for all you do.

2

Client Served

Rating: 5

Definitely a great non profit! They bring patients of this rare disease together! They fight along side with us for treatments and a cure! Their employees are beyond dedicated to the cause. The conferences every 2 years provide HOPE for people like me effected by this. They are the shining glimmer of hope that keeps patients like me fighting!

2

Client Served

Rating: 5

PHA was invaluable when our 10 year old daughter was diagnosed with PH in 2014. The information provided was very well-organized and clear and answered our many, many questions. However, PHA has actually become even more important to us following the death of our daughter from PH at 11 years old--the only hope for PH lies in research and so we will continue to support PHA in that endeavor. Our greatest hope is that other families will not have to suffer as we are and the Pulmonary Hypertension Association will be instrumental in making that a reality.

2 Colleen51

Client Served

Rating: 5

I was born with PH, and felt alone most of my life with this illness. When I began my first medication to treat symptoms, I learned about the PHA. The organization has given me so many opportunities to meet phriends, and to help others who have been diagnosed with PH in the last 12 years. It truly has made a huge difference in my life, and I am so thankful for how much they do for the PH community!

1

Client Served

Rating: 5

When my daughter was diagnosed with pulmonary hypertension in 2010 at 12 years of age. My heart broke my world shattered and my mind went into a tailspin. "Your daughter has a terminal disease" . "There are no approve treatments for children". Then we found the PHA and found an amazing doctor. Research has been done improving treatments. We found our PHamily and our new normal. Without the PHA we were lost. Now we are PHighting, and surviving. Thank you PHA for bringing hope to us, our PHriends and our PHamilies.