PULMONARY HYPERTENSION ASSOCIATION NEWS

Why Congress Should Support Supplemental Oxygen Reform

Like many people who rely on supplemental oxygen, Colleen Connor tries to conserve how much she uses because her monthly allotment is limited. “Imagine every time you leave your home, you need to plan how much time you will be outside your home and your activity level, so you know how much supplemental oxygen to sustain you,” Connor told congressional staffers in a June 5 PHA legislative briefing on Capitol Hill. “You are forced to make tough choices.” Connor, a Pulmonary Hypertension Association board member, was among the PHA advocates who participated in briefing.

Find Your Community During Scleroderma, HHT Awareness Months

During HHT and scleroderma awareness months, join a PHA Facebook group related to these conditions that can cause pulmonary hypertension. Hereditary hemorrhagic telangiectasia is a genetic disorder that causes abnormalities of blood vessels. Scleroderma is an autoimmune disease that affects connective tissues and blood vessels. If you have HHT or scleroderma and PH, find support among others with those conditions.

Share Your Recipes for Eating Well With PH

Consider sharing your recipes for tasty and healthful. The Pulmonary Hypertension Association has a new Eating Well With PH initiative. Submit your favorite PH-friendly recipe for nutritious, enjoyable meals.

PHA Advocates Unite for Access to Care

Pulmonary hypertension advocates have met with 31 lawmakers’ offices since May to seek support for PHA legislative priorities, including the Supplemental Oxygen Access Reform Act. The advocacy campaign began May 5 in connection with World Pulmonary Hypertension Day.

To support others, Jamie Mykins healed herself

Jamie Mykins, 44, uses her professional skills to as a mental health counselor to help others – and herself. Diagnosed with pulmonary hypertension in 2014, she learned to advocate for herself, accept her situation and embrace her passions. Mykins, of Orlando, Florida, shares her story with the Pulmonary Hypertension Association’s Right Heart Blog.

Make PHA 2024 a Family Vacation To Remember

Thinking of attending PHA 2024? Consider making your trip a family vacation. All children are welcome to join the fun in Indianapolis Aug. 15-18, whether they have PH or are children of a patient, caregiver or health care provider. PHA 2024 International PH Conference and Scientific Sessions includes activities in our Kids Room, a field trip to the Indianapolis Children’s Museum and more. Learn more.

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PHA News, a publication of the Pulmonary Hypertension Association (PHA), is the trusted source of up-to-date news, community events listings and lifesaving information about pulmonary hypertension for patients, families and caregivers, healthcare professionals and supporters.

PA - U of Penn (In Person)
Thursday, June 20, 11:00 AM - 12:30 PM EDT
VA - Hampton Roads (In Person)
Thursday, June 20, 1:00 PM - 3:00 PM EDT
UT - lntermountain Medical Center (Hybrid)
Thursday, June 20, 4:00 PM - 6:00 PM MDT
CO - NOCO (In Person)
Friday, June 21, 12:00 PM - 1:15 PM MDT
CA - Cedars Sinai (In Person)
Saturday, June 22, 9:00 AM - 11:00 AM PDT
MI - Ann Arbor (Virtual)
Saturday, June 22, 11:00 AM - 1:00 PM EDT
OH - OSU (In Person)
Saturday, June 22, 12:00 PM - 2:00 PM EDT
VA - Northern Virginia (In Person)
Saturday, June 22, 12:00 PM - 2:00 PM EDT

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