Not sure where I would really be today without the guidance, understanding, and personal help I received from the Pulmonary Hypertension Association. Living in rural South Dakota gave me few options for Support. PHA sent me science based information about my disease, and information relating to resources that were available. 10 years later, I am a support group leader under their guidance for my local community in Colorado. The people PHA has surrounded themselves with are the reason this nonprofit leads the way. Thank you from the bottom of my heart and I will spend the rest of my days advocating for you.
It’s because OF PHA I have my life back ! They were able to provide me with a support group and dr’s when I had none !!!
I donate monthly because I believe in their mission and have seen firsthand how their programs help patients with PH. The team is extremely committed and caring and have the patients best interest always in mind.
PHA has been my lifeline since the week I was diagnosed. I greatly appreciate their patient support and education, as well as their tireless efforts in advocacy and research. The patient is at the center of everything they do, and it shows in all the ways they work to make our journey with this rare disease easier. Thank you, PHA.
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I was diagnosed with pulmonary arterial hypertension almost 16 years ago. I was so scared in those early days and PHA helped me find other patients like me who could teach me how to navigate PH. Today PHA remains that lifeline for so many patients. As a dedicated volunteer for the organization, I am consistently in awe of all they offer to the PH community, as well as caregivers and medical professionals. The PHCC program, certifying care centers of excellence, along with the corresponding registry (PHAR), is leading the way in ensuring top tier patient care for patients all over the USA. I wouldn't have made it without PHA, and I am forever grateful.
Top notch patient advocacy organization with the patient centric mission always in focus.
Provides patient, caregiver and family support through Comprehensive Care Centers, PHA funded research, both clinical and laboratory trying to catalyze efforts toward a cure, and local and virtual support groups and placing disease awareness in front of HCP's governmental agencies and elected officials.
Fiscally responsible use of donor resources as well.
The Pulmonary Hypertension Association (PHA) is dedicated to connecting patients and caregivers to each other, providing resources and educational materials and opportunities through webinars, conference and support groups. In addition, this organization does an outstanding job at supporting research and education for the medical community. PHA is continually working to improve patient outcomes by accrediting PH care centers and supporting a patient registry. PHA advocates for all members and the PH community overall. Together, we do great things even better.
I was diagnosed with PH, a condition that I had never heard of, 20 years ago. I am so grateful to PHA for the information and support from PHA that I have learned to really live with PH. I feel that the PHA support is so important to PH patients that I have been a Support Group Leader for more than 10 years.
I've attend several PHA conferences and have had the opportunity to meet many other patients and PH specialist that I've learned so much more about PH. PHA is an important resource for PH patients.
PHA is a spectacular organization with passion to truly meet their mission “to extend and improve the lives of those affected by PH”. I have been a clinical volunteer since I started taking care of patients with PH in 2015. You can see the efforts to meet this mission that includes educating of providers, support and education of patients and in addition advocating for better care. My volunteer time has been a life changing experience for me and I can see the positive effect it has for my patients.
The PHA has been an amazing asset in our journey of caring for my daughter with pulmonary hypertension. The resources they provide such as finding a specialist, information for schools, and overall support have made it much easier for us to ensure that my daughter is being cared for in the right way. We were able to find a support group through PHA to allow us to get to know other patients, which is so helpful. PHA advocates so much for the patients and their contribution to research is helping pave the way for new medications to prolong lives. PHA also has a conference every 2 years that is full of learning, meeting other PH patients, and getting to hear about new advances in medicine. This conference is the most amazing opportunity for anyone affected by PH. I can’t thank PHA enough for everything they do for the patients and caregivers.
Pha has been a lifesaving support for me. It’s educational programs , peer mentor support and local support groups have been vital in helping me to understand the disease, how to get the best medical care, how to advocate for myself, help me feel enabled to deal with emotional issues related to ph. Pha has allowed me to feel valued by providing me with the opportunity to be a peer mentor and pass along my experiences to help others. I am a 15 year survivor and 15 year PHA member. Slainte, Carole
PHA has been a steady resource for me as a parent with a child with this rare disease. I know they are working so hard to spread awareness, fund research and support the PH community with many events and support groups.
The Pulmonary Hypertension Association is a godsend to someone who is newly diagnosed with Pulmonary Hypertension. It is the ONLY place to find information and research. But it doesn't stop with those newly diagnosed. It provides ongoing support through connections to other patients and experts in the field. It truly has changed my life. I went from being fearful of my future to looking at my future with HOPE. By using the website to navigate through all my questions, worries and doubts I am confident in my health-related decisions. Their ongoing educational resources are fabulous. It is an outstanding resource.
Pulmonary hypertension is one of the most undiagnosed diseases and advanced care with knowledge is imperative to staying healthy. No one should be told where they have to go for care after diagnosis. Due to insurance purposes, I lost my mother two years ago, as she was a told there would be no coverage if she went elsewhere. Thru is non-profit, hopefully more can receive the knowledge and education they need to avoid heartbreak w a loved one, as I have .
The PHA is the number 1 resource of patients with a rare and serious disease called pulmonary hypertension. In addition to having information for patients they also have resources for medical providers and organize support groups for patients and raise money and awareness.
PHA Association is my family! It can be yours too, just reach out! They will grab your hand . Your darkest days will have light and be filled with strength and hope. They understand, they “get it”. A group of caring and very understanding people. ♥️
It was a pleasure to partner with PHA for the 2023 Columbus, Ohio O2 Breathe Walk. With PHA's help, our support group was able to increase pulmonary hypertension awareness in our community, come together in an act of solidarity, and raise money to fight this disease. PHA's support was incredible.
Over the years I have found PHA to be very helpful with answering questions and suggesting help. I was lucky enough to be able to attend meetings of my local Long Island chapter until Covid. At each chapter meeting there was always a guest speaker who discussed topics of relevance and the members were very friendly and willing to offer suggestions. I have just learned that our meetings are to resume shortly. It’s nice to know that if you need help someone is always there to help.
PHA is a light in the darkness created by a rare, often misdiagnosed illness. It's a haven rife with information, support, advocacy and awareness to the pulmonary hypertension community. PHA is a very well-rated and well-reviewed charitable organization that is responsible and dedicated to the PH community and driving towards making life better for all affected by this very tough disease. I'm proud to be a member.
I am a patient and participated in the PHA- O2 Breathe Walk on October 8th! It was amazing to have this awesome opportunity to walk with family, friends, and my support group.
The PHA provides our support group with the funds to share a meal and an educational session at our support group meetings every other month. Our group is robust and we often spend a great deal of money for food and drinks. Patients absolutely love the support groups. We typically have 25-45 people in attendance. Patients finally feel like they are not alone or isolated. Anyone effected by PH are welcome to attend to meet others just like themselves, share tips and tricks, and learn a little while having a great time together. Our group not only has bimonthly meetings, we schedule fun activities together like a family picnic, holiday parties, a home cooked low sodium Thanksgiving Dinner, and paint parties. All of these activities could not be made possible without PHA. Many lasting relationships have started with the support group. We were fortunate enough to host an O2Breathe National walk a couple weeks ago. PHA helped advertise, register, and organize the event. Everyone was so excited to participate. Lastly, patients utilize the PHA website to gain accurate information about their disease, research opportunities, support group information, and this is yet another way, these patients connect.
I have been diagnosed with PAH for 8 and a half years. The first year I was misdiagnosed with the wrong type of PH, my doctor then did not know about PH or the PHA. If I had known such organization existed I believe it would have spared my agonizing year to find a correct diagnosis.
The PHA puts everything together in one place to make it possible for someone to have the best opportunity at understanding what is happening to them and find information to live their best lives.
I am forever grateful that they exist.
Our daughter was diagnosed 12 years ago with Idiopathic Pulmonary Arterial Hypertension which is a rare progressive disease with no cure. We were fortunate to connect with a specialist at Mayo Clinic who shared with us information about PHA & how they support, educate & advocate for PH patients as well as provide grants for research. In the past 12 years they’ve made great progress in treatments, awareness & education as well as being there for the patients & caregivers. They’ve been a great partner & the reason we have organized an annual fundraiser & just completed our 10th annual golf tournament, silent auction etc. We just can’t imagine this journey without the support of the PHA. For more information on our fundraiser you can visit our website www.puttinphorepoots.com
The Pulmonary Hypertension Association (PHA) stands as a shining example among patient-focused organizations. Its leadership not only hears the voices of its members but also extends far beyond the ordinary scope of assistance. They facilitate the organization of our local patient support group meetings, awareness walks, and active participation in national conferences. The level of support provided is truly indescribable. I am profoundly grateful for the opportunity to be a part of PHA's patient support group in El Paso Texas. I am thrilled to continue my service for years to come, contributing to the crucial mission of raising awareness for the debilitating disease that is pulmonary hypertension.
16 years ago we lost our young niece, daughter and granddaughter to PH. It would’ve been easy to be angry and depressed, but I decided I would channel my energies towards an organization that helped me deal with this loss and work towards the hope for a cure.
I couldn’t have done it without the wonderful group of people that comforted me and worked hard alongside me to make PHA the most wonderful organization in the nonprofit world!
I continue to work hard to honor the memory of my niece by volunteering my time to this amazing organization…… the pulmonary hypertension association.
I was diagnosed with pulmonary hypertension at the young age of 16. PH is a rare disease and when I got it, it was even more rare. Twenty-five years ago there was vey little support, information and knowledge about PH. My first connections with PHA changed my life. I went from feeling alone to meeting others like me and that was 100% due to support groups and conferences sponsored and planned by PHA. It was like a world of resources opened up to me. I learned more about my disease and how to advocate for myself at my medical appointments. I also gained understanding about the basics of PH. PHA helps myself and so many of my friends living with the disease. From teaching us how to live with PH to even fighting for us through legislation and creating centers across the country that are accredited PH Centers. PHA goes above and beyond for my PH friends and I, I am so thankful for all they do! I hope one day, a cure will be found. Thank you PHA for all the effort you put into the research of PH.
PHA has been instrumental in helping me navigate the last 15 years of pulmonary arterial hypertension.
Educating through conferences, webinars, and wonderful online resources...
Connecting through online and in-person support groups, events...
Accrediting PH Centers so patients can feel confident their physicians are experts in this specialty field of medicine.
I cannot say enough good things about PHA!
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The Pulmonary Hypertension Association was a lifesaver my upon diagnosis of pulmonary hypertension. PHA's resources helped me find a qualified physician and they connected me to local support groups. In addition they have both advocated for me and supported me in learning how to advocate for my PH community. They have made it easy for us to have our voices heard on issues important to us that require legislation changes (think access to therapy, etc.) PHA does a terrific job at educating the community with their online presence and web sessions. They also host conferences every two years, bringing together patients, caregivers, physicians to educate and share best practices. They contribute to and advance PH research, to include a patient registry. I am sure that the education and connections PHA has made for me have made a tremendous impact on my survival and quality of life with PH.
Fantastic organization. The Pulmonary Hypertension Association has the information and support I need for having such a critical illness which most people have never heard of.
They are a life line, exceptional people, information and support.
PHA is such a valuable resource for those of us within the PH community. The continuous support through the years is top-notch. The staff are so caring, and you see their passion shine.
I've worked with PHA at conferences, grassroots campaigns, and other advocacy efforts.
PHA is an amazing and necessary organization. The work they do to support those impacted by pulmonary hypertension, as well as raise awareness of this rare and terrible disease, is phenomenal. They've been a huge help to my family since my sister was diagnosed in 2016.
I just recently became involved with PHA as a caregiver and have been really surprised at what all they do and provide for the community. Doctors, nurses, patients, caregivers, pharmaceutical companies, the staff, the new CEO… Everyone is involved and it’s like a real PHamily! Happy to have an organization like this for the support and resources they offer to any and everyone who needs them. It’s a strong organization and I plan to donate this year on giving Tuesday. I attended their Conference in Atlanta this year and it was a very eye opening and fun experience. I Hope to be able to attend many more and help out where I can. PHA is very patient forward- everything they do is for the patients and families of anyone with Pulmonary Hypertension.
i can't begin to tell you how PHA has saved my life.....i am blessed to be a part of this amazing organization... i met them in 2018 at my first group meeting after a 2010 diagnosis ..i moved home to die...i met pha at my first group meeting...and have been going on the road with them ever since PHighting and telling my story all over the country and speaking to the senate and congress for them as a patient.....PGighting for lower drugd and insurance loopholes...its the staff at PHA that does all the work so all i have to do is show up...they are without a doubt an amzing wonderful compassionate loving organization and i am proud to be a paft of it..!
I was diagnosed in 2011 with Pulmonary Hypertension and did not believe I would
Be alive this long. With help and support of Pulmonary Hypertension Organization, I
Am a support group leader, run a support group and assist other patients in getting the support and resources that they need
Diagnosed in 2008 with Pulmonary Hypertension secondary to Sickle cell and this organization is absolutely wonderful.
After deciding how to become involved, I jumped in head first as a Support group leader, then joined several committees to help the organization continue to fulfill its mission.
I am currently serving my second term as a Board member and also enjoy being involved in Advocacy to help pass much needed legislation for this rare disease as well as others. The organization has many resources for newly diagnosed, caregivers, and allied health professionals. They also serve as a bridge between pharmaceutical companies and patients where our care, research and pharmaceutical concerns take priority. The Pulmonary Hypertension Association has grown and continues to expand its expertise as the top science based medical resource for this community.
I would encourage any patient, caregiver or healthcare provider to join the association and roll up their sleeves as a volunteer to help us PHight; and to keep hope for a cure alive.
I first became involved with The Pulmonary Hypertension in the Spring of 2018, just a few months after my wife Maureen passed away as a result of this dreadful disease. Initially, my involvement was with the local support group here in Jacksonville, Florida. In October of 2018, working with the Development Staff of the PHA, I created a fundraising campaign geared towards raising $36,000 ($1,000 for every year I was with my wife). Six weeks later, we had raised almost $50,000. I continue to donate privately, and have started to become more involved by donating my time in serving on the Finance Committee and the Development Committee
The Pulmonary Hypertension Association deeply cares for its members by putting them at the center of all that they plan and do. They are inclusive of patients fighting the progressive disease of pulmonary hypertension, all while also inviting their family members and friends to join the movement. I am thankful to be a part of the Pulmonary Hypertension Association and co-lead a support group in my community, El Paso PHighters. The PHA has supported us every step of the way and at all meetings. Although we are miles apart, the PHA’s genuine care about our support group and members is felt in our hearts.
this organization helped me better understand my disease and also gave me a platform where I could help others who have the same disease. The tools are all in place to help make our local support group thrive.
PHA has been a vital part of my work life for the past 13 years as a Pulmonary Hypertension coordinator for an accredited center. This site has many resources for patients to help them navigate through their pulmonary hypertension journey. But as a health care profession, this site has provided resources for me that I can use to help our patients. For example, the different treatments that are available. They are easy to read and print out for patients. Their website provides a listing of all support group in the USA.
But to be honest, I'm also biased. I am a support group leader for our area in Wisconsin and follow the PHA guidelines for running our meetings. I enjoy meeting with patients and getting to know them in a personal setting. I am also a member of the Support Group Leader Advisory Board which serves as council to address issues within supports groups or leaders. Prior to the pandemic, PHA provided assistance for our annual walk to help raise funds for pulmonary hypertension.
Being involved with the Pulmonary Hypertension Association is chance for me to give to back to the patient population on a different level. I have met many amazing people (patients and staff) through his organization.
Tina Stiyer RN
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
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 !
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.
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!!!!!
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!
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!
PHA has empowered me with hope and the tools to help other PHers. They work tirelessly to help the pulmonary hypertension community.
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!!!
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
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.
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.
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.
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!
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.
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!
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.
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!
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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!
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.
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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!
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.
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
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.
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.
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.
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!
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!!!
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.
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.
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.
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.
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.