Community urged to ‘share your rare’ during PH awareness month
Global efforts spotlight personal stories while breaking down disease stigma
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The Pulmonary Hypertension Association (PHA) has launched its “Living Under Pressure” campaign to kick off Pulmonary Hypertension Awareness Month this November, highlighting the daily physical and emotional challenges of living with the rare disease.
The organization joins other advocates worldwide to raise awareness of pulmonary hypertension (PH), a chronic, progressive condition in which the blood vessels connecting the heart to the lungs narrow or become blocked, forcing the heart to work dangerously hard to pump blood.
“Too many people with PH still face a long road to diagnosis, challenges accessing the treatments and specialty care they need, and the daily burden of managing a complex condition. Awareness can help change that,” Mitchell Koppelman, chair of the association’s board of trustees, said in a press release. “By helping more people, including healthcare professionals, recognize PH and understand its impact, we can reduce delays in diagnosis, strengthen support and help ensure people with PH receive the care they need.”
Educational webinars and community events
To support grassroots advocacy, the PHA has published a digital toolkit containing shareable graphics, educational materials, and sample social media posts. The association is also organizing several educational and fundraising gatherings throughout the month. Events include:
- An in-person fundraiser in Plano, Texas, on Nov. 14
- The hybrid Fourth Biennial Pulmonary Hypertension Symposium 2026 on Nov. 12, accessible online or in person in Celebration, Florida
- The Phoenix O2breathe Walk in Arizona, rescheduled to Dec. 12 due to severe weather forecasts
In November, the PHA and partner groups, such as Pulmonary Hypertension Association Canada, are hosting educational webinars to inform and empower patients and families. These include:
- A discussion about the future of PH treatments on Nov. 3
- A webinar about advocating to Congress on Nov. 4
- A talk about shared decision-making on Nov. 17
- A webinar about billing also on Nov. 17
Meanwhile, the nonprofit organization phaware global association is marking the month with its Share Your Rare social campaign. The initiative invites people to share things about themselves that make them unique. Participants can use a downloadable template to share their stories online using the hashtags #ShareYourRare, #phawarenessmonth, and #ImAwareThatImRare.
Global campaigns emphasize personal identity
“For 11 years and over 600+ episodes, our phaware podcast series has introduced us to the global PH community whose stories make them RARE. This awareness month social activation event essentially asks: ‘Now it’s your turn. What makes YOU rare?'” Steve Van Wormer, CEO and co-founder of phaware, told Pulmonary Hypertension News.
The group organized each week around a distinct theme: the first week invites community members to post about a unique talent, while subsequent weeks focus on personal passions, discovered inner strengths, meaningful relationships, and their rare stories.
“Whatever makes you rare, know you don’t have to be rare alone,” Van Wormer said. He noted that the initiative allows people to engage and connect without feeling pressured to disclose a medical diagnosis publicly, while still building ties across the broader PH and pulmonary arterial hypertension communities.
International efforts will also take center stage on Nov. 6 for PH Day UK. Advocates in the U.K. will lead a campaign, titled “We Need To Talk About PH,” which focuses on breaking down the social misunderstandings and stigma often tied to the disease.
Informational toolkits, downloadable graphics, and advocacy guides for the U.K. campaign are available online.
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