Online Community Advocacy: Engaging and Spreading Awareness Beyond the “Like” Button

PHA’s community is incredibly active when it comes to interactions on social media platforms such as Facebook, Twitter and Pinterest. Living with a rare disease like pulmonary hypertension can be frightening, and many patients and caregivers turn to social media for support and a sense of hope. They also use social media as a platform to spread awareness beyond the PH community. These PHers have gone beyond just “liking” our Facebook page to actively spreading awareness to their online networks. What ideas do you have for spreading awareness online?

ElisaMeet Elisa

Elisa Lipnick of Roseville, Calif., was diagnosed with lupus in 2010 and PH in June 2012. Elisa “liked” PHA’s Facebook page in 2012 and used our posts to keep her informed about events. She says she never intended to reach out to other patients, but now two years later, Elisa has become an active member on social media. She advocates for awareness mostly by sharing our tweets on Twitter and posting images on her personal Instagram account. She uses photos of her workouts with hashtag #PulmonaryHypertension to get people to ask questions about PH and why it’s such a big deal that she can do the activities she is doing. As a result, Elisa reaches people who have never heard of this rare disease. She finds this encouraging because she always receives a vast amount of “likes” and reassuring comments.

HaleyMeet Haley

Haley Lynn of Amarillo, Tex., was diagnosed in 2010 at the age of 18. As an artist, Haley uses her creative abilities to cope with her diagnosis. In 2012, Haley created her first T-shirt design “Just Breathe” and wanted to share her design with the PH community to spread awareness. Using Facebook, Twitter and her personal blog (, Haley reaches supporters as far away as Canada and England to support the cause. Haley believes it is important that PH patients use online resources to connect with one another and raise PH awareness. Haley is also a recipient of a 2013 Tom Lantos Innovation in Community Service Award to help her use her T-shirts to raise more PH awareness on and offline. Haley is pictured at right, sporting her T-shirt design. Turn to page 20 in this issue of Pathlight to read about the 2014 Lantos award recipients.

StaceyMeet Stacey

Stacey Sayer of Broomfield, Colo., advocates for PH awareness on behalf of her diagnosed family members. Stacey also sits on PHA’s Social Media Advisory Board and helps manage the content on PHA’s Pinterest page. She uses images from events and patients to spread awareness about PH. As Stacey says, “A visual medium can elicit greater emotion than plain text. Leveraging visual storytelling can elevate your brand message in a powerful way. In social media, the old saying is true, ‘A picture is worth 1,000 words.’”

Get Involved

These women all say spreading awareness online is easy, and they have some tips to get you started:

  1. Use your personal story.
  2. Follow PHA and then share and retweet.
  3. “Friend” other PHers and share their stories.
  4. Have fun with it and tap into your passion.

Do you have ideas for raising awareness online? Share them with us at For more information on how to get involved in raising awareness online, visit

This article first appeared in the Summer 2014 Pathlight.


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.