PH Association Using Social Media to Spread Awareness on Rare Disease Day 2016

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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PH and rare diseases

This Monday, Feb. 29, marks Rare Disease Day 2016  and the Pulmonary Hypertension Association (PHA) is encouraging patients, caregivers, and their families to join in the social media campaign celebrating the PHA community’s successes in raising public awareness of this and other rare diseases, and in demanding better treatments and support.

The PHA, whose foundation was laid 25 years ago by four women meeting around a kitchen table in Florida, is now an international community of over 16,000 pulmonary hypertension (PH) patients, caregivers, family members and healthcare professionals. Increasingly, it has turned to social media to unite the PH community, raise awareness, and create paths to action for the 30,000 Americans living with PH, and those yet unaware they already have the disease.

For this year’s Rare Disease Day, the PHA is using memes on social media to ask the rare disease community worldwide, “How do we make the voice of rare disease stand out?” — and, through answers ranging from public policy advocacy to community-building and the sharing of personal stories, will promote discussion and engagement on this and other important questions, and on the community’s successes, the PHA said in a press release.

This latest social media campaign was launched a week ago with a meme to celebrate the PHA’s #Heart2Cure awareness campaign that in three months raised some $14 million through donated TV, radio, national magazine, transit, billboard, and Times Square publicity.

“PHA has seen great advancements in the areas of patient and caregiver support, medical education, PH Care Center accreditation, and research leading to 14 FDA-approved treatments — more than those for all but two of the nearly 7,000 identified rare diseases,” said Rino Aldrighetti, PHA president and CEO, in the release. “We are fortunate that at a time when social networking is key to raising the voice of rare diseases, the unique nature of PHA strengthens our awareness efforts which, in turn, empowers PH patients and their families.”

The PHA recently announced that E! News host Terrence J will serve as its national celebrity ambassador. Terrence J, whose fan base includes almost 2 million Twitter followers, will support the #Heart2CurePH awareness campaign by serving in its next phase of public service announcements and by assisting at the PHA’s International PH Conference and Scientific Sessions, to be held in Dallas on June 17–19, 2016.

Last spring, the association also launched its secure myPHA website (, which has now more than 1,200 patient and caregiver members communicating with others who share this rare disease.

Rare Disease Day is a global annual initiative that takes place on the last day of February. Its main objective is to raise awareness among the general public and leaders — policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases and their impact on people’s lives.

In the U.S., a disease is considered rare if affects less than 200,000 people. In keeping with the international spirit of Rare Disease Day, the PHA will also highlight international resources through public and social media communications. The organization acts as a model for over 70 global PH associations.

Globally, an estimated 30 million people some form of a rare disease.

A Conversation With Rare Disease Advocates