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 and our commitment to PAH.
Team PHenomenal Hope is a nonprofit organization that provides hope and opportunities to those in the pulmonary hypertension community who need it most through education, research, and patient services
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.
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.
[On Screen Text: Working with a PAH Expert. PAH Initiative - Sponsored by United Therapeutics - Committed to Improving the Lives of Patients.]
[On Screen Text: Karen PAH Initiative Ambassador]
It was a shock to have this diagnosis.
[On Screen Text: Laura PAH Initiative Ambassador]
It's all confusing at first, it's scary and confusing.
[On Screen Text: Denise PAH Initiative Ambassador]
This disease is so rare that every doctor may not know about it. You may have to find that PAH specialist.
I would encourage others to go ahead and do their homework on this disease. And to go ahead and speak to their doctors
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.
I'm fighting for my life, and so when I'm in the doctor's office, I have to be selfish.
I know what I want and expect. And I will not take anything less than that.
I fully take the lead and I will tell the doctor how I'm doing or what I've been doing.
Some doctors are great with helping you connect with support groups or helping you connect with someone who does have PAH.
If I have a question, I can call the main nurse of the department and they'll call me back within a day. If there’s something urgent, they’ll try to get them on the phone right away.
We have an app through the hospital. We communicate through email a lot, and we also have Facebook friends with my nurse. So, we are able to communicate in a lot of different ways nowadays.
I use MyChart, and we do all the testing every six months, and just keep on top of my care.
[On Screen Text: PAH Initiative - Sponsored by United Therapeutics - Committed to Improving the Lives of Patients. For more resources about PAH, please visit www.PAHInitiative.com]