Dear PH Community,
Every year, the Pulmonary Hypertension Association (PHA) participates in a global campaign to draw attention to rare diseases. We mark Rare Disease Day – the last day in February – by engaging the PH community and joining more than 800 other organizations from 70 countries on social media to draw attention to rare diseases.
Many of you not only live with pulmonary hypertension (PH), which is rare, but you also live with one of a number of other rare diseases, such as scleroderma, hereditary hemorrhagic telangiectasia, idiopathic pulmonary fibrosis and sickle cell disease. One thing rare diseases have in common is that they aren’t always widely known among the public, scientific community and health care professionals. For PH, that means some people may be misdiagnosed with other illnesses that have similar symptoms. By participating in Rare Disease Day and similar events, we can educate others about PH and our work to extend and improve the lives of people affected by PH.
One of the most effective ways to raise awareness is to share your stories: stories of personal triumphs and heartbreaks, successes and scientific breakthroughs, and even setbacks. PHA and many people in our community harness the power of social media to amplify those voices. Others participate in PHA’s advocacy network to encourage policy makers to address the needs of those living with PH and other rare disease.
Our biennial PHA 2020 International PH Conference and Scientific Sessions June 12-14 is, without a doubt, a tremendous opportunity for the PH community to come together, raise awareness, find support, and advance patient care and the science that will one day find a cure.
Health care professionals and the scientific community can help focus attention on PH by participating in PHA 2020 International PH Conference and Scientific Sessions and sharing their work on PH research and patient care. Applications to submit an abstract for the PHA 2020 Scientific Sessions Poster Hall are due March 31.
For patients, care givers and others who support our mission, PHA 2020’s Research Room is another opportunity to raise PH awareness and contribute toward finding a cure. Researchers can advance their studies by speaking directly with hundreds of patients and collecting primary data from the largest gathering of PH patients at one site. Investigator applications are also due at the end of March. Patients and caregivers who plan to attend PHA 2020 can look at the March issue of Pathlight for a story about what they can expect in the Research Room, along with links to get an early start on paperwork.
We need continued awareness and involvement to achieve PHA’s vision of a world without PH. Opportunities like Rare Disease Day on Feb. 29 and our upcoming Conference are only some of the ways in which you can participate. We encourage you to continue to share your stories on social media, join our advocacy efforts or advance scientific research. Don’t forget to connect with us on Facebook, Twitter (@PHAssociation), Instagram (@PHAssociation) and LinkedIn. Use #LearnAboutPH to join the conversation.
Thank you for everything you do on Rare Disease Day and throughout the year to improve the lives of people affected by PH. Please let me know your thoughts and ideas. I look forward to hearing from you [BradWongPHA@PHAssociation.org].
Brad A. Wong
PHA President & CEO