CEO Update: Rare Disease Day Plays Important Role in Increased PH Awareness

Dear PH Community,

The last day of February — whether it is the 28th or the 29th in a leap year —  is special since it is recognized internationally as Rare Disease Day. Each year, the Pulmonary Hypertension Association (PHA) is an active participant in this important global awareness campaign. Today PHA proudly partners with more than 800 rare disease patient organizations from 70 countries to amplify our voice and promote all rare diseases, but especially pulmonary hypertension (PH). This unity is critical since PH sometimes presents itself with other rare diseases, such as scleroderma, hereditary hemorrhagic telangiectasia, idiopathic pulmonary fibrosis and sickle cell disease.

PHA is harnessing social media as a way to increase PH awareness in conjunction with Rare Disease Day (the number of people liking and sharing our posts today is phenomenal!) and urging advocates across the U.S. to participate in free state advocacy events occurring through mid-March in collaboration with the National Organization for Rare Disorders (NORD). NORD has compiled some staggering statistics that effectively demonstrate the prevalence of rare diseases — any disease, disorder, illness or condition that affects fewer than 200,000 people in the U.S.:

  • There are approximately 7,000 rare diseases.
  • An estimated 25-30 million Americans (nearly 1 in 10) have rare diseases.
  • More than 90 percent of rare diseases do not have a treatment approved by the Food and Drug Administration.

While PH overall is considered rare, a lack of awareness of the disease means there are people who have the disease and don’t know it. Participation in events such as Rare Disease Day is one tool helping PHA increase awareness of PH, helping realize our mission to extend and improve the lives of individuals affected by the disease. Implementation of our Strategic Plan is vital to achieving PHA’s vision of a world without PH. Advocating for the PH community — raising awareness among the public, health care professionals, policy makers, influencers and elected officials — is the leading component of this plan.

Each of you sharing your PH stories is the most effective tool in raising awareness. Together, we can accomplish more. Join PHA’s advocacy network to encourage decision makers to address the needs of those living with PH and other rare diseases. If you attend a Rare Disease Day state advocacy event, share your experience with PHA at Advocacy@PHAssociation.org. In addition, follow PHA on Facebook (facebook.com/PulmonaryHypertensionAssociation), Twitter (@PHAssociation), Instagram (@PHAssociation), and LinkedIn (linkedin.com/company/pulmonary-hypertension-association) to catch the most up-to-date information on Rare Disease Day, and use #LearnAboutPH on social media to join the conversation.

Thank you for all you do every day to help improve the lives of all of those with PH. Please let me know your thoughts and ideas at BradWongPHA@PHAssociation.org. I look forward to hearing from you.

Best wishes,

Brad A. Wong
PHA President & CEO

2019-02-28T23:05:19+00:00 February 28th, 2019|