Dear friends,

Please join the Pulmonary Hypertension Association (PHA) and more than 80 other patient organizations next week in observing World PH Day.

Since 2012, the global pulmonary hypertension (PH) community has come together May 5 to bring attention to this rare lung disease. Whether you have PH, care for someone with PH or are a health care professional, we invite you to join us in marking this important event.

World PH Day began in 2012 in Madrid, Spain, as a scientific symposium after toxic rapeseed oil caused PH in thousands of people in the early 80s. Today, PHA Europe runs the World PH Day campaign, providing online tools to engage the global community in building PH awareness.

To support the overarching World PH Day campaign, the Pulmonary Hypertension Association here in the U.S. has a new theme each year. This year’s theme is “United to Cure PH.” The slogan recognizes global strides that have improved the lives of those affected by PH, including research, treatment, support and care management. Although the disease is caused by different factors around the world, it affects everyone in similar ways.

For example, left heart disease is the main cause of PH in the U.S. but schistosomiasis is the most common cause in parts of Africa and Asia. Schistosomiasis is spread by a parasite in water used for washing, bathing and recreation.

We also know that treatment access varies by country. In the U.S., there are 14 treatments for pulmonary arterial hypertension, but some countries have far fewer. Access is affected by economics, disaster, war and politics. Even in the U.S., many people with PH have difficulty getting the kind of liquid oxygen they need.

Although PH-related challenges differ by country or geographic region, the goal of World PH Day is the same globally. We need to broaden recognition of PH symptoms, emphasize the importance of early diagnosis, improve access to quality care and effective treatments, and identify trusted, credible informational and educational resources.

You can help us broaden that recognition by participating in PHA’s World PH Day activities. Observances begin May 5 and continue throughout the month with workshops, community events and advocacy opportunities.

To start, PHA is hosting a free in-person educational workshop in San Diego on Saturday, May 6. The daylong event is part of our PH Connects: PH Community Workshop series, which used to be called PHA On the Road. We’ll have a similar workshop in July in the Boston Area. If you live in the San Diego area, come see us – it’s not too late to register.

We’re also hosting two O2breathe fundraising walks in May: in Washington, D.C., and Detroit, Michigan; and participating in a community fundraiser in the Lansing, Michigan, area. Although these events support PHA’s mission to improve and extend the lives of those affect by PH, they’re more than just fundraisers. They’re joyous community gatherings that connect people with others who have PH, as well as caregivers, health care professionals and pharmaceutical representatives. A recent walk in Southern California brought together more than 200 people!

An important way to get the word out about PH is to share your story. We encourage you to take part in online legislative visits with members of Congress and their staff. You can help secure support for legislation to protect access to affordable health care and improve supplemental oxygen access.

We also make it easy for your to share your story and spread awareness with our World PH Day toolkit. It’s easy to download sample posts and graphics to share through your social media hashtags. Don’t forget to use the #WorldPHDay2023 hashtag.

No matter where you live, your participation in World PH Day activities can help improve quality of life, raise life expectancy, secure earlier diagnosis and improve treatment access.

As always, I look forward to hearing from you.

With gratitude and respect,