Additional Resources and Support
Explore your PAH community
The PAH Initiative wants to help you find PAH experts, reach out to PAH support groups, and connect with the wider PAH community.
United Therapeutics proudly sponsors the PAH Initiative. The company was founded upon a personal commitment to PAH. Learn more about United Therapeutics, our commitment to PAH, and what’s in our pipeline.
PHA envisions a world without pulmonary hypertension. This organization is dedicated to improving the lives of everyone affected by pulmonary hypertension. Through support, advocacy, awareness, education, and research programs, PHA empowers patients, caregivers, families, healthcare providers, and researchers worldwide.
phaware® creates pulmonary hypertension awareness and global engagement on behalf of families, caregivers, and medical professionals affected by PAH and supports innovative research efforts to help find a cure.
Scleroderma is a chronic connective tissue disease. Patients with scleroderma are at high risk of getting PAH. The Scleroderma Foundation supports patients and their families through support programs, peer counseling, raising public awareness, and stimulating research to improve treatment.
Pulmonary Hypertension News is a digital news publication dedicated to offering comprehensive daily news coverage of the science, medicine, and human-interest stories surrounding the effects of the disease, as well as the effort underway to treat and eventually cure it.
Find a PAH expert
Because PAH is rare, not all heart specialists (cardiologists) and lung specialists (pulmonologists) are considered experts in PAH. For this reason, people living with PAH should seek out a doctor who specializes in treating PAH.
Click to expand transcript
[Video title: Working with a PAH Expert. PAH Initiative, Sponsored by Unitied Therapeutics, Committed to Improving the Lives of Patients]
[On-screen text: Karen, PAH Initiative Ambassador]
Karen: It was a shock to have this diagnosis.
[On-screen text: Joanne, PAH Initiative Ambassador]
Joanne: I learned very quickly after my diagnosis that it was very, very important to see someone who specializes in pulmonary arterial hypertension.
[On-screen text: Laura, PAH Initiative Ambassador]
Laura: It’s all confusing at first. It’s scary and confusing.
Joanne: I have seen in my support group folks who want to stick to a doctor, maybe a local doctor that they know.
[On-screen text: Denise, PAH Initiative Ambassador]
Denise: This disease is so rare that every doctor may not know about it.
Joanne: Even though you’re comfortable with that doctor, it’s important to find someone who specializes in this field because that person is going to have all of the knowledge that you are going to need.
Denise: I really think that you need to see a PAH specialist because a PAH specialist is going to have a lot more dedicated knowledge to the PAH world.
Laura: I would encourage others to go ahead and do their homework on this disease.
Joanne: I walk in every appointment and I have my notes. I have my questions already written down.
Karen: I’m fighting for my life, and so when I’m in the doctor’s office, I have to be selfish.
Denise: I fully take the lead and I will tell the doctor how I’m doing or what I’ve been doing.
Laura: Some doctors are great with helping you connect with support groups or helping you connect with someone who does have PAH.
Karen: If I have a question, I can call the main nurse of the department and they’ll call me back within a day.
Denise: We have an app to the hospital, you know, we are communicating through email a lot and we also have Facebook’s friends with my nurse. So, we are able to communicate in a lot of different ways now-a-days.
Joanne: I have been incredibly fortunate to be under their care.
[End of video: PAH Initiative, Sponsored by United Therapeutics, Committed to Improving the Lives of Patients. For more resources about PAH, please visit www.PAHInitiative.com. Copyright United Therapeutics Corporation. All rights reserved.]