Friday, February 27, 2015

TOMORROW is Rare Disease Day!

Help us get the world (and the internet) buzzing about PH awareness for Rare Disease Day, and not the color of clothing!

Spring into Your Own Support Group is around the corner, and this is the right time to consider starting a PH support group in your town. PHA can help you find patients, pay for food and mail meeting information to our members. All you need to do is pick a place, time and day to meet! Learn more and let us know if you’re interested.

Thursday, February 26, 2015

Rare Disease Day is Two Days Away

In the spirit of Rare Disease Day, which is this Saturday, make sure you are spreading the word about pulmonary hypertension and why early diagnosis matters. Since symptoms of PH are commonly associated with other diseases, it is often misdiagnosed. The average time between PH symptom onset and diagnosis is 2.8 years. This means that nearly 75 percent of patients have advanced PH (Class III or IV) by the time they are diagnosed. The Pulmonary Hypertension Association’s Early Diagnosis Campaign aims to facilitate accurate diagnosis and appropriate intervention early in the disease state with the goal of improved patient outcomes. Learn more about PHA’s Early Diagnosis Campaign.

Wednesday, February 25, 2015

Free Materials Available at the PHA Store
Did you know you can order FREE PH awareness, educational and support materials through PHA’s Store? Check out our latest selection of materials, cards and guides, including the newly released New Normal. This book (also available as a PDF download) is both a resource and a source of reflection, with stories representing a cross section of patients across gender, race, age and type of PH.  Order materials.

Rare Disease Day is Only Three Days Away

Even though Rare Disease Day is on a Saturday (Feb. 28), you can still raise awareness at work over the next few days. We have great resources to help you support the larger rare disease community while raising awareness for pulmonary hypertension. Your workplace, or that of a friend or family member, is a great place to start. Order free global genes ribbons, take a Handprints Across America photo, or hand out PH wallet cards from your desk. Join 30 million Americans working to end rare diseases.

News Segment Promotes PH Awareness and Features a PHCC

In honor of National Heart Month, a recently aired news segment raises pulmonary hypertension awareness and features a newly accredited PHA Center of Comprehensive Care: the University of Colorado’s PH Clinic. Dr. David Badesch, Director of the University of Colorado PH Clinic and Distinguished Advisor to the PHA Scientific Leadership Council, is also featured in the news segment. Watch it here.

Tuesday, February 24, 2015

Participate in National Call-In Day
Add some advocacy to your next get-together. Order PHA’s FREE National Call-In Day postcards. Distribute them to friends or in your community to let people know how they can make a big impact on the PH community by making three quick phone calls on Thursday, April 16.

For more information or to order your free postcards, contact Angelia.