Aiming to educate on all things PH for global Awareness Day May 5
Supporters are 'United for' this year’s World Pulmonary Hypertension Day
More than 80 organizations globally, including the U.S.-based Pulmonary Hypertension Association (PHA), will unite on May 5 for World Pulmonary Hypertension Day, celebrated annually to heighten awareness of pulmonary hypertension (PH), which affects an estimated 75 million people worldwide.
This year’s global initiative is led by PHA Europe, a nonprofit umbrella organization that represents 33 PH patient associations spanning 27 countries across that continent. In addition to educating the general public, the campaign is aimed at raising awareness about PH among public authorities, policymakers, scientists, industry representatives, and health professionals.
According to a PHA press release, this year’s awareness day theme — “United for” — underscores the importance of coming together to address critical issues faced by those living with the progressive disorder, marked by high blood pressure in the pulmonary arteries that supply the lungs. PH patients may experience symptoms including shortness of breath, weakness, excessive fatigue, fainting, and chest pain.
Turning to social media to advocate for PH community this awareness day
In keeping with this year’s theme, the campaign is seeking to raise awareness through focused sub-themes. These are:
- United for Early Diagnosis
- United for Hope
- United for Access to Care
- United for the Patients
- United for a Cure.
“We encourage the global PH community to intensify its efforts to educate health care professionals, policy makers and the public about PH,” said Matt Granato, president and CEO of the PHA.
Granato stressed that new PH therapies “should be available, affordable and accessible throughout the world.”
“That takes cooperation and commitment from industry, health care providers, organizations like PHA, and the people most affected by PH — patients and caregivers,” Granato said.
“This year on World PH Day, ‘Unite for’ a brighter future for people with PH wherever they live,” he added.
The PHA’s campaign may be followed on Facebook, Instagram, LinkedIn, and X, formerly Twitter. The association is providing a digital toolkit with images, educational messages, and other resources — available in English, Spanish, and French — to be shared on social media platforms using the hashtag #WorldPHDay2024.
We encourage the global PH community to intensify its efforts to educate health care professionals, policy makers and the public about PH. … This year on World PH Day, ‘Unite for’ a brighter future for people with PH wherever they live.
Other graphics also are available, as are descriptions of the varying types of PH. These include pulmonary arterial hypertension, PH due to left heart disease, PH due to lung disease, PH due to blood clots in the lungs, and PH due to blood and other disorders.
Beginning on World PH Day, the organization will host virtual legislative visits to the offices of U.S. lawmakers. During these visits, advocates will speak out for key legislation such as the Supplemental Oxygen Reform Act of 2024 (S. 3821), which would ultimately make the use of oxygen more accessible to patients who need it.
PHA Canada aiming to illuminate country’s monuments in purple
Elsewhere, the Pulmonary Hypertension Association of Canada (PHA Canada) is marking this day — and it hopes every day — by encouraging patients and others to raise awareness by educating people about PH and developments in research and treatment. The group now is offering videos about the disease, and stories from patients and others who are affected, to increase understanding.
PHA Canada also is providing templates for requesting World PH Day government proclamations, as well as the illumination of Canadian monuments in purple, the color that represents PH.
“In Canada, World PH Day is brought directly to communities across the country,” the association states on the initiative’s webpage.
“Each year members of the PH community encourage their local community leaders to recognize World PH Day by lighting up a local monument purple. Since 2014, thanks to these efforts, monuments have been illuminated in periwinkle purple on May 5th from coast to coast,” the webpage states.
Other ways to show support in Canada are through participation in “Fight for Our Lives,” a rare disease treatment development campaign, and by reading and sharing findings from a survey on the socio-economic burden of pulmonary arterial hypertension. The findings from that 2021 Canadian PH community survey, conducted in collaboration with the research institute Canadian Vigour Centre, focus on the socioeconomic burden of PAH.
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