Give a Caregiver Shout-Out!

The "Caregiver Shout-Out" honors family members and friends in the PH community who provide patients with daily encouragement and support. For a chance to express gratitude to a loved one in Pathlight, tell us about a family member or friend whose support has made a difference in your life.

Medical professionals: PHPN abstract submission deadline extended to June 3

Medical professionals: Need more time to submit an abstract for the PH Professional Network Symposium Poster Hall? The deadline for abstract submission has been extended until June 3, 2013!

Research abstract audiences will be a mixture of new to experienced healthcare professionals working in the field of pulmonary hypertension. While PHA encourages the submission of original abstracts, submissions do not need to be original work. Abstracts also do not need to be fully executed in practice.

Guidelines for specific clinical situations, implementation of a process to improve patient outcomes or innovative use of technology in clinical practice

•     Development or implementation of a performance improvement program
•     Patient safety initiatives
•     Patient satisfaction improvement initiatives
•     Identification and implementation of PH educational needs for healthcare professionals
•     PH nursing orientation programs, role implementation or development of practice guidelines

Topics are subject to the discretion of the Symposium Abstracts Subcommittee and the Pulmonary Hypertension Association. If you have any questions about the appropriateness of your topic, please contact a PHPN abstract mentor by emailing PHPN@PHAssociation.org.

 

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.