Shire is looking for the BRAVEST caregivers in the world

If you know a caregiver who performs in extraordinary ways, who gives their time, support and compassion regularly through caring for someone else in a meaningful, selfless manner, then click below to learn more about the Shire BRAVE Awards.  If they meet the eligibility criteria, nominate them for a 2013 BRAVE Award and they could receive $10,000 USD or their local country currency equivalent from Shire.

PHA Staff Attend NORD 30th Anniversary Gala - Inspired by patient speech

Earlier this week, a number of us at PHA attended the National Organization for Rare Disorders 30th Anniversary Gala and was extremely inspired by a speech delivered by a 22-year-old afflicted with epidermolysis bullosa, a rare and crippling dermatological disorder that affects internal organs.

“Just because we are labeled rare, we are no less than any other person… while we did not choose to have a rare disorder, we can choose to act for change. We can choose to find our own voice amidst the search for effective treatments and expanded access to quality, affordable health care. We accept this challenge as we move on to new frontiers. And as we do this, we will never forget those remarkable leaders who first declared that we were worth it.”    –Megan Barron

Is Facebook Part of Your Estate?

When you begin creating or updating your estate plans, you'll likely spend the bulk of your time on these two points: determining which assets you have, and then deciding which people and charities will receive these items after your lifetime.

But have you given a thought to your online legacy?

Bulgarian Society for Patients with Pulmonary Hypertension Online Dance for World PH Day on 5/22

Miss World PH Day already? Well the fun isn’t over yet! Join the Bulgarian Society for Patients with Pulmonary Hypertension from 7 a.m. to 12 p.m. on Wednesday, May 22 online  to learn how to dance and to “get breathless for PH!”

Golf tournament honors Pfafftown woman’s struggles

The 2013 NC Cure PH Golf Tournament will be held this Saturday, May 18, at the Pudding Ridge Golf Club in Mocksville, NC. This annual event, hosted by Cindy Pickles and her support group, features a golf tournament followed by a dinner reception with speaker presentations, raffles and silent auction. This year’s event will be held in memory of Donna Wesley.

Monthly Patient Call is May 23

Want to chat with other patients? We have a monthly telephone chat to discuss living with PH!

When: Thursday, May 23, 8 p.m. ET

Where: On the phone and online. The web portion is optional. You must dial in to participate. Details will be provided after you register:

For assistance: Kim, 301-565-3004 x777

World PH Day Unites the Globe

World PH Day 2013, held May 5, brought associations around the globe together to raise awareness and show support for pulmonary hypertension patients. The Asociación Nacional de Hipertensión Pulmonar in Madrid, Spain, held the first World PH Day last year with the hope that the day would truly become a world day with events around the globe. From a handful of events last year (a symposium in Madrid and some satellite events in China and Argentina) to more than 60 events this year, this dream has truly become a reality. 
 
Every PH patient association in the world did something special for World PH Day, including groups of people in Chile and Costa Rica, where patients and families are trying to start associations. In Chile several people held a protest for insurance rights, and in Costa Rica patients and families celebrated a “healthy living” day. This year many groups around the world took to the streets to raise awareness by handing out flyers or holding flash mobs, a sudden gathering of a group of people in a public place. The day was also used as a way to reveal new programming or materials, like a Patient’s Guide in Argentina and a new website design in South Africa. PHA Europe’s “Get Breathless” sporting events included everything from bicycling to Six-Minute Marathons to boxing and dancing activities. Even Pope Francis acknowledged World PH Day by mentioning patients and their families in his address on May 5. For more World PH Day coverage and to see a video of Pope Francis acknowledging pulmonary hypertension in his speech, visit PHA President Rino Aldrighetti's blog. 
 
For those who could not join an event in person, the World PH Day website provided opportunities for participation. The website has had more than 11,000 page views and nearly 4,000 website views, with a peak of nearly 600 views on World PH Day. People from 83 countries visited the website. The World PH Day Facebook group had a reach of more than 3,000 people on World PH Day alone. Additionally, 149 people submitted their photos to the Worldwide Photo Mosaic, and many more posted pictures on other social media sites like Facebook and Weibo! Photos from World PH Day events will be available on the World PH Day website soon.
 
If you missed World PH Day, it’s not too late. Some events inspired by World PH Day are still going on, including PHA Europe’s Ironman events and online dance classes hosted by the Bulgarian Society for Patients with PH on Wednesday, May 22, from 7 a.m. to 12 p.m. ET. Start your Wednesday off by getting breathless for PH!