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May 28, 2013

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May 28, 2013

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.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

May 27, 2013

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May 27, 2013

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.

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Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

May 27, 2013

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May 27, 2013

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.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

May 27, 2013

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May 27, 2013

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!

Ways to make it better...

If I had to make changes to this organization, I would...

Pulmonary Hypertension Association impresses with their flexibility to respond to changing needs and environments. PHA should continue with the goals of its mission statement, expanding its out reach and dual responsibilities of responding to patients/families and advocating for research and funding.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

May 12, 2013

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May 12, 2013

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!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

May 11, 2013

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May 11, 2013

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!!!

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

May 11, 2013

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May 11, 2013

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.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

April 18, 2013

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April 18, 2013

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.

More feedback...

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

April 17, 2013

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April 17, 2013

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!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

April 17, 2013

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April 17, 2013

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.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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