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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.

2

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.

DTaylorSF

Client Served

Rating: 5

The Pulmonary Hypertension Association has helped me more than I can say in just a few words. At a time when I didn't know what pulmonary hypertension was, much less how I should go about battling it after my diagnosis, the Pulmonary Hypertension Association provided support, access to other patients like me, and unbiased information about pulmonary hypertension.
Thank you, Pulmonary Hypertension Association, for all you do!

Previous Stories

Volunteer

Rating: 5

Ten years ago I was diagnosed with pulmonary hypertension. Eight years ago I attended my first pulmonary hypertension support group meeting. Six years ago I reluctantly took over leading the support group meetings. In the last six years I have been involved with the Pulmonary Hypertension Association (PHA) as a volunteer and support group leader.
The services PHA offers and the advocacy they provide are astounding. I never expected a nonprofit to be so supportive of their constituency. PHA reaches out to ALL those affected by pulmonary hypertension from patients, to family members and caregivers, to friends.
PHA continues to grow as new needs are recognized.
I feel so lucky to have found PHA. I have learned so much about pulmonary hypertension and how to improve my quality of life. PHA has helped me live and thrive in spite of my diagnosis. I don't think I would have survived so long without the information I have found through PHA.
Thank you for all you do, Pulmonary Hypertension Association!

Lorraine10

Client Served

Rating: 5

This organization provides a positive, informed environment for those of us that have this rare disease. I was diagnosed with IPAH in Nov '12. First information my husband and I found about the disease was devastating. PHAssociation was the first and only source we found for hope and accurate information. Continues to be a huge resource to lean on.

Previous Stories

Client Served

Rating: 5

I was diagnosed five months ago with Pulmonary Arterial Hypertension. The first information that we found on the internet was devastating. Only after finding this organization's site and visiting with my specialist did we learn that more current information is actually hopeful. I have used the organization to attend their online seminars, read about others stories, and become more positive about a future! This organization has really prevented me from spiraling into depression. My husband and I plan on attending upcoming events to get more involved in the PH community, and PHA keeps us informed how to do so!

Jan J.

General Member of the Public

Rating: 5

My family has a history of Familial Pulmonary Arterial Hypertension. I am the fourth in a generation to be blessed with this horrible disease. Without the help of PHA and the educational resources available to the Pulmonary Hypertension patients, many of us would be lost trying to live a "NEW NORMAL" surfing the internet getting false information that is either out dated or sometimes not true in many ways. PHA has webinars that we can interact with, support lines that we can call and talk to other Patients and Families dealing with the same thing as we are, and understands what we are going through. They guide us in the right direction. I am so glad to be a part of this community.

Kerri-Juan R.

Client Served

Rating: 5

PHA is truly amazing. From a mother who had a child with Pulmonary Hypertension to a mother who lost a child to Pulmonary Hypertension, this association was there for me when needed. I found all my questions that I had from PHA and was able to talk to others when my daughter was diagnosed with this terminal disease. I have also run fundraisers with the help of PHA. They have helped me keep my daughters name alive through fun and collecting money to help find a cure one day. I

Client Served

Rating: 5

With a rare disease it is hard to find helpful, timely, correct information. PHA supplies all that in a user friendly way. And if the information you seek is not on their web site the staff will go out of their way to help you find it. In addition to detailed about this disease, they also provide guidance about support groups, conference, and how to get financial help if needed. They have helped me in so many ways, while always deferring medical decisions to my Drs.

Board Member

Rating: 5

PHA is an awesome organization that combines patient education and needs with caregivers and medical professionals. They are all about helping patients with any issue related to pulmonary hypertension.
If you want a good organization to contribute to PHA has a 4 star rating from Charity Navigator, the watch dog of non- profits 10 years running. That is totally unheard of.
I attribute PHA to saving my life. When the doctors still had not figured out what was wrong, they sent me a Patient Survival Guide that put me on the right path to getting the correct diagnosis and ultimately the right treatment.
My role at PHA is more than a Board Member. I am a PH patient, a local support group leader, and a fundraiser for the organization that has given so much back to me.

Colleen B.

Board Member

Rating: 5

I found PHA five years ago, shortly after my diagnosis. The community of patients became my lifeline. As time went on and I got more directly involved in advocacy, PHA provided multiple opportunities and connections that allowed for a real difference to be made. What I love about this organization is that if you have drive and a desire to get involved, there is always a meaningful way to do so. This goes for patients, caregivers, and doctors alike, and has created an incredibly supportive and integrative community making true strides towards a cure.

Barbara118

Client Served

Rating: 5

My 24 year old son was just diagnosed with Pulmonary Hypertension last Thursday at Duke Medical Center. His doctors in Charlotte suspected that he had this disease and I immediately went on-line to research the condition. The Pulmonary Hypertension Association website and support staff educated me, encouraged me and got me through this very difficult week. I have made contact with the support group in Charlotte and I look forward to meeting with them in the future. I didn't realize that there were PH centers that are dedicated to this disease . I am so happy with my decision to have my son treated at a PH center . This disease is very rare but this organization has done an incredible job in providing resources for those newly diagnosised as well as those living with the disease - I am a very grateful parent!

ChristinaRoo

Donor

Rating: 5

I lost my brother in 2011 after he fought this disease for over 15 years. He was told that he would be lucky to graduate high school and he ended up with an associates degree. The PHA has/had been a great help for this very rare disease. My family wanted to pass out the purple wrist bands at my brothers wake and funeral and we were able to get over 400 wristbands in time. I have now done 2 5k's in memory of my brother while raising money for this great organization and I plan on raising more money. They were one of the first places that I have gone to over the years to learn about this disease!!!

Orena S.

Volunteer

Rating: 5

In 2003 my daughter was diagnosed with PH. PHA helped us learn about the condition and find resourse around the nation to find the best treatments for her and when all the treatments failed they helped her find a way to cope. With help from PHA my daughter spent the last 6 yrs of her life raising awareness and fighting to change the process of this condition. She was diagnosed to late and they helped her fight to make sure it does not happen to others. They gave my daughter a lot of hope and confidence in life. PHA is the greatest resource for patients and families. They were there for me when my daughter lost her battle with PH at 14 years old. Patients and caregivers need this kind of support because no matter where you are you know that the PHamily is not far away, just a phone call and they are a shoulder for you.

General Member of the Public

Rating: 5

This organization is a godsend for me. Pulmonary hypertension is a very rare disease, and most doctors know very little about it. I have had tips and suggestions from other members which have made a huge difference for me. It is somewhere I can go and get accurate, easy to understand answers. Without this help, I don't know what I would have done.

Client Served

Rating: 5

PHA has been a Lifeline for us. I am a mother/caregiver of my son - he is 32, diagnosed in 2007 with IPAH. He served 4 yrs. in the Navy, was working. Now he is living with me collecting disability and VA Comp. PHA Assoc. has been our biggest resource since the week he was diagnosed. We were fortunate enough to be able to attend 2 conferences. This is very informative, supporting experience. It is so great to have patients, doctors, drug reps., caregivers, whole families, come together to learn from each other and meet others across the world that similar issues and share solutions and concerns.
The PHA website is an everyday tool that endless links for help with all kinds of support for patients and caregivers, insurance help, doctor locators, support group locators, emergency help, eating helps, etc.
My son and I have been involved with doing Awareness Tables at Health Fairs and the Association has been so helpful providing handouts and posters so we may share with others in the importance of early diagnosis. Thank you PHA. Bonnie P.

Gabriele G.

Professional with expertise in this field

Rating: 5

The Pulmonary Hypertension Association does an amazing job in helping patients affected with pulmonary hypertension and their families. The pulmonary hypertension association also connects scientists, like me, with the needs of the patients. This allows me to work harder and to work more focused on trying to find a cure for pulmonary hypertension. And also to find new markers that will ultimately allow physicians match the particular disease type for each pulmonary hypertension patient with optimal medication. As I see it, the Pulmonary Hypertension Association is superbly important to find a cure.

Volunteer

Rating: 5

In July 2011 I was diagnosed with Pulmonary Arteral Hypertension. PHA was a god send to me. Gave very helpful infomation and encoraged me when I was scared. Belong to support group also give me the opportunity to meet other patients first hand. Every othe year there is a international conferance. They provide scholorships to a many patients as they can. I was very glad I was chosen to get one. It was one of the best experiences in my life and helped understand Pulmonary Hypertension. I was inspired to give back so I am co leader to my local support group. Another thing that is wonderful is that medical research is going on. Thanks PHA for al you do.