PHANews Archives

The following archives are provided for historical purposes only. Given the changing nature of the web, some links may have expired, but each past issue will still give you a sense of what was going on in the PH community at any given time.

2014 | 2013 | 20122011 | 2010 | 2009 

2012

Dec. 12, 2012 - Healthy for the Holidays

  • Blog from PHA's President: Sometimes Those That Have Lost The Most Give Most Back ...
  • Spotlight On... How to Stay Happy and Healthy During the Holidays
  • Get Smart: Calm, Cool and Collected: Restorative Yoga for the PH Patient
  • Living Better with PH: Keys to Healthy Food Shopping
  • PH Community Scoop: PHers Raise Awareness in an Effort to Lessen Misdiagnosis This November; What Did You Do During Awareness Month?
  • From the PHA News Desk: Last Chance! Submit an idea for the Conference Theme Contest
  • Medical Community Bulletin: Medical Professionals: Watch Highlights from PVD Conference
  • Video Spotlight: Juan Alejos, MD appeared on radio station KKJZ, where he talked about pulmonary hypertension
  • PH News Headlines
  • Generation Hope Blog: Life ... and Death

Nov. 28, 2012 - PHers Lobby on the Hill in the Name of Research

  • Blog from PHA's President: Awareness Month: Congressional Luncheon
  • Spotlight On... Conference Theme Contest: Want to Attend PHA's 2014 International PH Conference for Free?
  • Get Smart: Fill Up on the Facts: Medicare Part D Chat Transcript Available; Keys to Healthy Food Shopping Webinar
  • Website Discoveries: PH Related Items in the PHA Store
  • PH Community Scoop: Virtual Candlelight Vigil; Congressional Luncheon Reaches Legislators from Coast to Coast; Thank You to Our November Special Event Organizers
  • From the PHA News Desk: PH Patient Makes Our Voices Heard Before the FDA; Make a Gift to PHA and See It Double
  • Medical Community Bulletin: Early Diagnosis of PH Webinar
  • Video Spotlight: Shari Caffrey awarded Local Lady Godiva award for her efforts in founding the Taylor's Wish Foundation
  • PH News Headlines

Nov. 14, 2012 - Share Your Stories

  • Blog from PHA's President: Awareness Month Voices from the PH Community
  • Spotlight On... Now It's Your Turn: Share Your Awareness Month Stories and Photos
  • Get Smart: Volunteering: 'How I Fight Back Against PH'
  • Living Better with PH: Four Ways to Keep the Holidays Special Despite PH
  • PH Community Scoop: Let's Hear it for Caregivers!
  • From the PHA News Desk: Submit Your Idea for the 2014 International PH Conference Theme Contest
  • Medical Community Bulletin: Video Series: History of PH
  • Generation Hope Blog: "PH Awareness Month Continues"
  • PH News Headlines

Nov. 1, 2012 - Awareness Month is Here!

  • Blog from PHA's President: Here Comes PH Awareness Month
  • Spotlight On... PH Online Awareness Day - Worldwide Nov. 1
  • Get Smart: Don't be Spooked by Diability Benefits
  • Website Discoveries: Preparing for Emergencies
  • PH Community Scoop: Last Chance to RSVP for PHA's Congressional Luncheon; October Special Events: Walking, Running and Sipping for a Cure
  • From the PHA News Desk: Submit an Idea of the 2014 International PH Conference Theme Contest
  • Medical Community Bulletin: Missed a Live Webinar? Get Up to Speed
  • Also of Interest: Scleroderma Foundation Congressional Call-in Day
  • Generation Hope Blog: "Please Understand"
  • PH News Headlines

Oct. 17, 2012 - Send in the Clowns!

  • Blog from PHA's President: Walking in the Sun ...
  • Spotlight On... You Can Promote PH in the Media, Too!
  • Get Smart: Get the Daily Dish on PH
  • Living Better with PH: Email Mentors: Support is Just an Email Away
  • PH Community Scoop: PHers Spread Hope and Awareness Across the East Coast with PHA Signature Fun Walks; Notable 1st Year Special Event in Santa Barbara
  • From the PHA News Desk: Stand Up and Be Counted: Become a Member
  • Medical Community Bulletin: Join Us for Our Live Webinar Series at PHA Online University
  • PH News Headlines

Oct. 3, 2012 - Advocate for PH Research!

  • Blog from PHA's President: The First Pediatric PH Research Fund is Opening Its Doors
  • Spotlight On... Put a Face on PH with PHA’s Congressional Luncheon
  • Get Smart: Gearing up for Open Enrollment: An Online Chat on Medicare Part D
  • Things I Found by Kathryn Frix: PHA Classroom
  • PH Community Scoop: PHA on the Road: Registration Still Open!
  • From the PHA News Desk: Awareness Month Tip: Make A Big Difference without Breaking a Sweat
  • Medical Community Bulletin: Missed a PHA Online University Webinar?
  • Also of Interest: Could You Benefit From Long-Term Care?
  • Generation Hope Blog: Sometimes it's PH
  • PH News Headlines

Sept. 19, 2012 - Awareness Month: Get Involved!

  • Blog from PHA's President: The Meaning of Events - Part 2
  • Spotlight On... Get in on the Action with PH Awareness Month!
  • Get Smart: Shine the Media Spotlight on YOUR PH Story
  • Living Better with PH: PHA's Monthly Patient Telephone Support Group
  • PH Community Scoop: A September to Remember!
  • From the PHA News Desk: Hear Ye! Hear Ye!
  • Also of Interest: Federal Employees: Fundraise for PHA in Your Workplace
  • PH News Headlines

September 5, 2012 - Stories to Inspire

  • Blog from PHA's President: Living Life: Savanha, Katie Grace and Kathy ...
  • Spotlight On... Peek Family Wins Home Makeover Contest, Raises Awareness of PH
  • Get Smart: PHA on the Road - New Brunswick Forum This Weekend!
  • Website Discoveries: Things I Found by Kathryn Frix: Show Your Stripes
  • PH Community Scoop: Parent, Caregiver Telephone Support; PHers Drum Up Support for PH Bill in Their Congressional Districts
  • From the PHA News Desk: Bring a Six Minute Marathon to Your Town
  • Medical Community Bulletin: PHA Online University: New Look, More Resources!
  • Also of Interest: FDA Rejects Use of Revatio in Children
  • PH News Headlines

August 22, 2012 - Spread the Word About Early Diagnosis

  • Blog from PHA's President: Expressing Yourself is the Pathway to Healing...
  • Spotlight On...Special Events: "Zebra-fied!"
  • Get Smart: Patients Telephone Support Group; Disability Assistance Webinar
  • Living Better with PH:When Should You Call Your PH Center?
  • PH Community Scoop: Thank You, Special Event Organizers!
  • From the PHA News Desk: Spread the Word About Early Diagnosis; iSEEK Receives PHA International Seed Grant
  • Medical Community Bulletin: Palliative Care and PH Patients Webinar; Investigating the Role of Micro Particles in PH Webinar; Building Medical Education in PH Event in California
  • Generation Hope Blog: Breathing Fire: PH and Anger
  • PH News Headlines

August 8, 2012 - Coping with PH

  • Blog from PHA's President: Surfing the blogs...
  • Spotlight On... PHA on the Road: Remember to Register
  • Get Connected: Caregivers, Parents and Patients Telephone Support Groups
  • Website Discoveries:Things I Found by Kathryn Frix: Coping with PH
  • PH Community Scoop: Photo Slideshow from PHA's International Conference
  • From the PHA News Desk: Researcher Profile: Dr. Stephen Mathai
  • Medical Community Bulletin: Webinar: Medical Professional Involvement in Support Groups
  • Generation Hope Blog: The Topic Nobody Wants to Talk About
  • PH News Headlines

July 25, 2012 - Fun Walks for Early Diagnosis

  • Blog from PHA's President: From a kitchen table to around the world...
  • Spotlight On... Fun Walks for a Cure
  • Get Smart: Tell Members of Congress "Sometimes it's PH"
  • Living Better with PH:Teens Share Tips for Coping with PH
  • PH Community Scoop: Special Events from Coast to Coast
  • From the PHA News Desk: Get PH News Every Day!
  • Medical Community Bulletin: Upcoming Webinars for Medical Professionals
  • Also of Interest: FDA Safety and Innovation Act Becomes Law
  • Generation Hope Blog: My First Time at Conference
  • PH News Headlines

July 11, 2012 - Improve Early Diagnosis This August

  • Blog from PHA's President: The special in PHA events...
  • Spotlight On... August District Visits
  • Get Smart: Lobby Locally webinar; Newly Diagnosed webinar; Telephone Support Groups for Caregivers and Parents
  • Website Discoveries:Things I Found by Kathryn Frix: Transplant and PH
  • PH Community Scoop: Congratulations, Shari Caffrey, Lady GODIVA Summer Honoree!; Thank You, Conference Volunteers!; A Kitchen Table Moment
  • From the PHA News Desk: Support PH Research
  • Medical Community Bulletin: Save the Date for the 2013 PH Professional Network Symposium; New Recordings Available at PHA Online University
  • Also of Interest: Health Reform and the Supreme Court: What Does It Mean for You?
  • Generation Hope Blog: Generation Hope After Dark 2012
  • PH News Headlines

June 27, 2012 - Get Ready for PHA on the Road

  • Blog from PHA's President: Conference 2012
  • Spotlight On... Sometimes it's PH campaign
  • Get Smart: PHA on the Road Is En Route; Telephone Support Groups for Caregivers and Parents
  • Living Better with PH: New fifth edition of Pulmonary Hypertension: A Patient's Survival Guide now available
  • PH Community Scoop: Vote for Lady Godiva Semifinalist to Gain Support for PH; Visit Your Congressmen in Your Home State this August; PHA Fights for Disability Assistance
  • From the PHA News Desk: $226,855 in Conference Scholarships Awarded; Stay Connected with PHA Daily Beat
  • Medical Community Bulletin: Actelion Awards Grants for Research in PAH
  • Generation Hope Blog: Let's Get Together
  • PH News Headlines

June 13, 2012 - Participate in Conference from Anywhere!

  • Blog from PHA's President: Carl Hicks, An Advocacy Hero
  • Spotlight On... Final Tips for PHA's 10th International PH Conference
  • Coming to Conference? Check this out!: Things I Found by Kathryn Frix: Conference Mobile App; Patient Participation in Medically Led Session Panels; Research Room Forms Available
  • Not coming to Conference? Participate from home!:Join PHA's Conference Advocacy Challenge; Follow Conference from home on the Conference blog!; Patient Telephone Support Group Live from Conference
  • Get Smart: Transplant Recording Available
  • PH Community Scoop: Special Events from Coast to Coast; Help Make a Community Member a Winner
  • Medical Community Bulletin: New PHA Online University Course: Considerations in Nursing
  • Generation Hope Blog: Get to Know the Generation Hope Advisory Board
  • PH News Headlines

May 30, 2012 - Online Conference Registration Closes June 8

  • Blog from PHA's President: Research ... A Story, A Call to Action
  • Spotlight On... Online PHA Conference Registration Closes June 8!
  • Get Smart: Patient Telephone Support Group Live from PHA's International PH Conference
  • Living Better with PH:Resources for Coping with PH
  • PH Community Scoop: New Calendar for Support Groups; PHA Thanks Organizer of "Take a Breath for PH - Get Moving for MS"
  • From the PHA News Desk: Have you seen the PH zebra?
  • Medical Community Bulletin: Live Education for Medical Professionals at PHA's 10th International Conference
  • Also of Interest: Proposed Lung Allocation Changes Open for Public Comment
  • Generation Hope Blog: Getting Excited for Conference
  • PH News Headlines

May 16, 2012 - NORD Awards PHA for its Leadership

  • Blog from PHA's President: World PH Day ... A First Among Many
  • Spotlight On... NORD Honors PHA For Leadership in the PH Community
  • Get Smart: Pediatric Webinar on Emergency Preparedness; Patient Telephone Support Group; Emotional Aspects of Transplant Webinar
  • Website Discoveries: Table Talk: Wired Conference Blog
  • PH Community Scoop: Jammin' for a Cause; Event-ful Spring Special Events
  • From the PHA News Desk: Conference Advocacy Challenge; A Mother Shares Her Conference Story; Outstanding Members Awardees Announced
  • Medical Community Bulletin: Building Medical Education in PH Events in Colorado and Connecticut
  • Generation Hope Blog: Fighting Back Through Blogging
  • PH News Headlines

May 2, 2012 - PHers Inundate Congress with Calls!

  • Blog from PHA's President: The Amazing Adventures of Steve and Lucas...
  • Spotlight On... National PH Call-In Day
  • Get Smart: Caregivers Creativity Webinar; Pediatric Webinar on Emergency Preparedness; Tips for Traveling with PH
  • Living Better with PH: Make Small Changes to Improve Your Self-Image
  • PH Community Scoop: World PH Day: May 5, 2012; Scrambling and Walking for a Cure
  • From the PHA News Desk: Kick Back at Generation Hope After Dark at Conference; Why is PH a Zebra?
  • Medical Community Bulletin: Webinar: 17-Beta Estradiol Attenuates Hypoxic PH via Estrogen Receptor-mediated Effects; PHA Online University Course: PH-Specific Oral Therapy; PHA Online University Course: PH-Specific Inhaled Therapy; Building Medical Education in PH Event in Colorado; Building Medical Education in PH Event in Connecticut
  • Also of Interest: The Social Security Scoop: Online Application Improvements; ¿Has Visto El Nuevo CuidadoDeSalud.Gov?
  • Generation Hope Blog: A Journey Not So Smooth
  • PH News Headlines

April 18, 2012 - Help PH Patients Access Transplants

  • Blog from PHA's President: May 5, 2012: First World PH Day
  • Spotlight On... Lung Allocation
  • Get Smart: PH Treatments Webinar Recording Available; Peer to Peer Fundraising Webinar
  • Website Discoveries: Things I Found by Kathryn Frix: Notes of Thanks and Remembrance; NEW Resources for Caregivers!
  • PH Community Scoop: Parents Telephone Support Group; Patients Telephone Support Group; Join PHA's Transplant Email Group
  • From the PHA News Desk: Introducing the Daily Beat: News for Your Health and Heart; PHA's Conference: Truly International!; New Patient/Family Led Sessions at Conference; Conference Roving Reporter Contest
  • Medical Community Bulletin: Webinar: 17-Beta Estradiol Attenuates Hypoxic PH via Estrogen Receptor-mediated Effects
  • Also of Interest: Social Security Benefits and Returning to Work
  • PH News Headlines

April 4, 2012 - Tell Congress About PH!

  • Blog from PHA's President: Different Notes, Same Page...
  • Spotlight On... National Call-In Day
  • Get Smart: Peer to Peer Fundraising Webinar
  • Living Better with PH: Join an Upcoming Telephone Support Group Call
  • PH Community Scoop: PHers Shower the Community with Media Successes; Special Events Spring into Action!
  • From the PHA News Desk: Conference Early-Bird Registration Extended; Families with PH Kids: What to Look Forward to at Conference; Share Your Appreciation and Memories at Conference; Check Out PHA's Rich History Timeline
  • Medical Community Bulletin: Building Medical Education in PH Event in Philadelphia; PHA Online University Course: Sarcoidosis-Associated PH (SAPH); PHA Online University Course: Topics in Pharmaceutical Therapy
  • Generation Hope Blog: Planning for College
  • PH News Headlines

March 21, 2012 - Join the Conference Advocacy Challenge!

  • Blog from PHA's President: Facebook, Timeline and PHA ... A Banner Opportunity
  • Spotlight On... Conference Advocacy Challenge
  • Get Smart: Webinar on PH Treatments: What's on the Horizon?; New Webinar Recording: Creativity and Healing through Blogging
  • Website Discoveries: Things I Found by Kathryn Frix: "Empowered by Hope: Understanding PH" Video
  • PH Community Scoop: Rare Disease Day; Patient Telephone Support Group; Congratulations, Joanne Schmidt!
  • From the PHA News Desk: Conference Early-Bird Registration Closing; Honor Those Who've Made a Difference in Your Life
  • Medical Community Bulletin: Building Medical Education in PH Event in Philadelphia
  • Also of Interest: PHA and AARC Team Up on Capitol Hill; Disability.gov Gets a New Look
  • Generation Hope Blog: Importance of a PHriend
  • PH News Headlines

March 7, 2012 - PH Treatments Webinar - Back by Popular Demand

  • Blog from PHA's President: Pediatric Research: The Power of One ... and a Half
  • Spotlight On... PH Treatments Webinar
  • Get Smart: Creativity and Healing Through Blogging; New Webinar Recording: Staying Active with PH
  • Living Better with PH: Ask a Question, Reach a Mentor!
  • PH Community Scoop: Pediatric Webinar: Traveling with My PH Child; Caregiver Webinar: Recognizing and Coping with Depression; Attendees Strut Their Stuff Against PH
  • From the PHA News Desk: Meet PHA's Newest "PHriend" Phineas; Join PHA's Transplant Email Group
  • Medical Community Bulletin: Building Medical Education in PH Event in San Francisco; New PHA Online University Recording Available
  • Also of Interest: CVC Launches Disability Guide and Journal; Insurance Companies to Provide Better Explanation of Health Coverage
  • Video Spotlight: Pa. State Rep. Keith Gillespie interviews PH patient and York PH Support Group Leader Michael McAdams and Dr. Dmitriy Zubkus, York Hospital Pulmonary Hypertension Program Director.
  • Generation Hope Blog: Staying Active with PH
  • PH News Headlines

February 22, 2012 - Nominate an Outstanding PHriend!

  • Blog from PHA's President: Bruno Kopp: Leader, Hero, Friend
  • Spotlight On... Outstanding Member Awards
  • Get Smart: Creativity and Healing Through Blogging; New Webinar Recording: Update on PHA by Rino Aldrighetti
  • Website Discoveries: PHA’s Glossary of PH Terms
  • PH Community Scoop: New Teens Page; Shout-out to Spaghetti Dinner Fundraiser; Telephone Support Group Meeting
  • From the PHA News Desk: New Emergency Medical Services Brochure; PHA in Top 1% of Rated Charities
  • Medical Community Bulletin: New PHA Online University Courses
  • Also of Interest: Capitol Hill Briefing on Rare Disease Day (Feb. 29); Cookbook for PAH - Submit Your Recipes
  • Video Spotlight: Michael Rivera Talks About PH on KRIS-TV (Corpus Christi, Texas)
  • Generation Hope Blog: My Experience of Vacationing with PH
  • PH News Headlines

February 8, 2012 - New Lantos Bill Sponsors

  • Blog from PHA's President: A 20 Year Anniversary . . .
  • Spotlight On... New Congressional Sponsors for PH Research and Education Act
  • Get Smart: Staying Active with PH; New Webinar Recordings; Conference on Childhood Pulmonary Vascular Disease
  • Living Better with PH: Tips for Co-Parenting a Child with PH
  • PH Community Scoop: Show Off Your PHA Swag; Telephone Support Groups for Caregivers and Parents
  • From the PHA News Desk: Roving Reporters Contest; Julie Hendry Memorial Scholarship
  • Medical Community Bulletin: New PHA Online University Courses; Webinar on Applying for Social Security Disability
  • Also of Interest: Campaign for Disability Employment Video Contest; National Organ Donation Day; Rare Disease Day Feb. 29
  • Video Spotlight: Migdalis Denis Talks About PH on CNN en Espanol
  • Generation Hope Blog: Put Your Headphones On
  • PH News Headlines

January 25, 2012 - Vote for Our PHriend's Name!

  • Blog from PHA's President: Affirming the Human Spirit . . .
  • Spotlight On... PHA Plush Naming Contest
  • Get Smart: An Update from PHA President, Rino Aldrighetti; Recorded Webinars Available for Planning Special Events and Applying for the Lantos Awards
  • Website Discoveries: PHA Outstanding Member Awards
  • PH Community Scoop: New Fun Walk for a Cure Logo; Support Groups Make New Year's Resolution to Stay Active
  • Medical Community Bulletin: Live Webinar on How to Help Your PH Patients Successfully Apply for Social Security Disability
  • Also of Interest: TSA Hotline for Travelers with Disabilities; National Organ Donation Day; FDA Leads Patient Advocacy Day
  • Video Spotlight: Doug Taylor Talks About PH on South Carolina’s WIS
  • PH News Headlines

January 11, 2012 - Register for Conference!

  • Blog from PHA's President: Making a Big Noise for Big Change...
  • Spotlight On... Registration for PHA's Conference is Now Open!
  • Get Smart: Help the PH Community Breathe Easier - Lantos Awards, Planning Your Spring Special Event, Newly Diagnosed Patients, Maintaining Relationships After Diagnosis
  • Living Better with PH: Staying Active: Tips for Exercising
  • PH Community Scoop: Nurturing Partnerships with Your Child's Medical Professionals, Telephone Support Groups for Caregivers and Patients, Waving Pom Poms for PH!
  • From the PHA News Desk: Lantos Awards, 50 State Media Challenge Wrap Up, Young Adult Support Group, End of Year Appeal
  • Also of Interest: EveryLife Art Contest
  • Video Spotlight: 60 Minutes Segment on Stem Cell Fraud
  • PH News Headlines

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.