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 

2013

Dec. 11, 2013 - Introducing the Specialty Pharmacy Feedback Form

  • Blog from PHA's President: You and your Specialty Pharmacy... an Important New Tool for you
  • Let Your Voice Be Heard: PH Caregivers: Let Us Know Your Opinions!
  • Advocacy at Work: PH Bill Has New Congressional Support Thanks to PHers' Outreach
  • E-Learning for Patients & Caregivers: New e-Learning Guide on Nutrition and Exercise
  • Education for Medical Professionals: Two New Courses on PHA Online University
  • Give Back: Make a Gift to PHA and See It Double!
  • PH News Headlines

Nov. 27, 2013 - Holiday Shopping that Supports the Community

  • Blog from PHA's President:Celebrating Life with the Breathe PHree Gala
  • Major Win for Pediatric Research:Victory! Pediatric Research Bill Passes Congress with Support from PH Community
  • Get Your Name on the Map:East Coast Miles – Sold Out!
  • Give Back to the PH Community:Black Friday. Cyber Monday. Now Giving Tuesday.
  • PH News Headlines

Nov. 13, 2013 - A Marathon of PH Awareness Raising

  • Blog from PHA's President: The Awareness Month Marathon...
  • Spotlight On...Race of Our Lives: Be Part of the Great Bike Race
  • Resources for Patients & Families: Check Out the New PHA Classroom e-Learning Guides
  • What Do You Think?: PH Caregivers: Your Opinions Wanted
  • Achievements in PH Awareness: What Have You Been Up to for Awareness Month?
  • PH News Headlines

Oct. 30, 2013 - Racing Toward PH Awareness Month

  • Blog from PHA's President: Racing Toward... PH Awareness Month
  • New Treatment Options Approved: Eleventh PH Drug Approved, the Second This Month
  • Fight Back... Online!: Participate in Awareness Month from Where You Sit Now
  • Get Involved in PH Awareness: Invite Congress to Lunch
  • Support PHA in the Workplace: Attention, Active Military, Federal and Postal Employees!
  • PH News Headlines

Oct. 16, 2013 - FDA Approves New PH Drug

  • Blog from PHA's President: Eleven Busy Days ... Building Better Tomorrows
  • Breaking News: New Drug to Fight PH: FDA Approves New Drug for PAH and CTEPH Patients in U.S.
  • Join the Blue Lips Challenge: PHA Midwest Chapter Announces Blue Lips Challenge
  • Get Involved in PH Awareness: Shine the Media Spotlight on PH for Awareness Month
  • PH News Headlines

Oct. 2, 2013 - Football, Pumpkins and PH Advocacy!

  • Blog from PHA's President: Football, Pumpkins and PH Advocacy!
  • Keep Posted on Race of Our Lives: Cue Sheet: Your Roadmap to Race of Our Lives
  • Generation Hope Blog: Need a Pick-Me-Up
  • Get the Survival Guide on Your Mobile Device: Now Available as an e-Book
  • Coping Through Creativity: Share a Photo of Your Creation
  • PH News Headlines
  • Video Spotlight: Young Patient Meets Patriots Star Tom Brady

Sept. 18, 2013 - Major Screening Recommendations Published

  • Blog from PHA's President: Dr. Hudak's Delayed Diagnosis Story
  • Major Recommendations Published: PAH Screening Recommendations Published for Connective Tissue Disease
  • PH Advocacy in Action: PHers Bring Advocacy Home
  • For Medical Professionals: New CE Course Available on PH Therapies for Children
  • PH News Headlines
  • Video Spotlight: Color PHor a Cure 5K

Sept. 4, 2013 - PH Bill Introduced in the Senate

  • Blog from PHA's President: We Continue to Advance
  • PH Legislation Gaining Traction: PH Bill Introduced in Senate, Endorsed by American Medical Association
  • Fighting Back Through Local Events: Young PH Patient to Be Ambassador of Hope at Baltimore Walk
  • New PH Resource for Kids: New Booklet for Kids with a PHer in Their Life
  • For Medical Professionals: Building Medical Education in PH Events in Illinois and Kansas
  • PH News Headlines: Novel PAH Drug Reduced Morbidity, Mortality Rates, and more!

Aug. 7, 2013 - Proposed PH Drug Makes Strides in the FDA

  • Blog from PHA's President: The Power of Teamwork: The PHPN Symposium
  • From the PH Community: PH Patient Participates in State-Wide Bike Event
  • PH Resources: Newest Survival Guide Now Available!
  • From PHA: Expanding Outreach: PHA Extends Relationships with Partner Research Organizations
  • Help Fund Research for a Cure: Contribute to PHA's Research Program
  • PH News Headlines: FDA Committee Recommends Approval of New Oral PH Drug Riociguat, and more!

July 24, 2013 - Explore New Course for Caregivers

  • Blog from PHA's President: Ripples in the Stream...
  • From the PH Community: PH Plus Blog: Nine Ways You Can Support Your Emotional Health
  • Resources for Caregivers: Check Out PH Ready for Caregivers
  • Support Research for a Cure: Your Support Can Make a Difference for PH Research
  • For Medical Professionals: PH Professional Network Symposium: Act Now for Reduced Registration!
  • PH News Headlines

July 10, 2013 - Submit Your Pet Photo Today

  • Blog from PHA's President: The Bill is in ... Now It's Up to You
  • From the PH Community: PH Plus Blog: Going from Miles to Inches
  • Upcoming Webinar for Family and Friends: PH Caregiving 101
  • For Medical Professionals: The ABCs of Teaching Adult Patients and Healthcare Providers
  • PH News Headlines

June 26, 2013 - Introducing New 2013 PH Legislation

  • Blog from PHA's President: From Fantasy to Reality ... and Only 359 Days, 4 Hours and 42 Minutes Away
  • From the PH Community: Generation Hope Goes to Boston
  • Introducing New PH Legislation: New PH Bill to Increase PH Awareness and Diagnosis
  • For Medical Professionals: Applications Now Accepted for Gilead Sciences Research Scholars Program in PAH
  • PH News Headlines

June 12, 2013 - Receive a Complimentary Survival Guide

  • Blog from PHA's President: Travels with Carl ... #1
  • From the PH Community: Colleen Connor's Philadelphia Gala Raises the Bar
  • Join PHA or Renew Your Membership: Receive a Complimentary Survival Guide When You Join Today
  • Calling All PH Kids and Teens!: Kids and Teens, Put Your Creativity to Work for a Cure
  • For Medical Professionals & Families: Family Session Included in Neonatal & Childhood PVD Conference
  • PH News Headlines

May 29, 2013 - Remembering a PHA Founder

  • Blog from PHA's President: Dorothy's Victory...
  • From the PH Community: Like Oil and Water: Work and PH
  • PH Patients and Families: Sign Up for Monthly Telephone Support Group Reminders
  • For Medical Professionals: PHA Partners with Yale School of Medicine for Upcoming Event
  • PH News Headlines

May 15, 2013 - World PH Day Unites the Globe

  • Blog from PHA's President: PHA on the Road Again...
  • From the PH Community: May Wedding Proves All Things Are Possible
  • Opportunity for PH Kids and Teens: Creativity for a Cure: PHA Art from the Heart
  • Uniting as a Global PH Family: World PH Day Unites the Globe
  • Medical Community Bulletin: Applications Now Accepted for Gilead Sciences Research Scholars Program for PAH
  • PH News Headlines
  • Video Spotlight: PHA Japan's "Get Breathless for PH"

May 1, 2013 - DOD Funds PH Research

  • Blog from PHA's President: From Yonkers to Jeddah ... in Common Cause
  • Spotlight On... DOD Funds PH Research
  • Get Smart: Pediatric Webinar: Preparing for the School Year with PH
  • Living Better with PH: Scleroderma and How It Affects Pulmonary Hypertension
  • From the PHA News Desk: National PH Call-In Day Victory!; There's Still Time to Light Your Flame of Hope!
  • Medical Community Bulletin: PH and Heart Failure: A Case Study; Insurance Issues for the PH-Treating Medical Professional
  • PH News Headlines
  • Generation Hope Blog: Spring into Action!

April 17, 2013 - Turn Your Members of Congress into PH Advocates!

  • Blog from PHA's President: Yes, We Can ... Yes, We Did!
  • Spotlight On... April 24 is National PH Call-In Day
  • Get Smart: Can What You Eat Affect Your Disease State?; ATS 7th Annual (Free) Patient Forum
  • Living Better with PH: Teen Transition Guide Now Available for Young PHers
  • PH Community Scoop: PHA Outreach to Specialty Pharmacy Improves Patient Care
  • From the PHA News Desk: Light a Flame of Hope!
  • Medical Community Bulletin: PH Professional Network Symposium: Registration Open!; PH in Schistosomiasis: An Overview
  • Also of Interest: Policy Changes will Benefit PHers Awaiting Transplant
  • PH News Headlines
  • Generation Hope Blog: Depression and PH

April 3, 2013 - World PH Day is Coming!

  • Blog from PHA's President: May 5: World PH Day is Coming ... and www.WorldPHDay.org is Here!
  • Spotlight On... Hey, Parents with PH! We Can Help You Put PH in the Headlines
  • Get Smart: PH Treatments: What's on the Horizon?
  • Living Better with PH: Can What You Eat Affect Your Disease State?
  • Medical Community Bulletin: Inotropic and Vasopressor Therapy for Decompensated Right Heart Failure; NYC PH Symposium
  • Also of Interest: PHANews Issues a Correction
  • PH News Headlines
  • Generation Hope Blog: Calling All GenHope!

March 20, 2013 - PHA Goes "on the Road"

  • Blog from PHA's President: Conference 2014: A Road Trip with PHA Leadership
  • Spotlight On... PHA on the Road: Registration Now Open!
  • Get Smart: PH Treatments: What's on the Horizon?
  • Living Better with PH: Breathing Your Way to Calm
  • From the PHA News Desk: Celebrate World PH Day on May 5
  • Also of Interest: Budding Scientist Makes Strides in PAH Research
  • PH News Headlines
  • Generation Hope Blog: Twenty Years with PH: A Reflection

March 7, 2013 - New PHA Chapters Across U.S.

  • Blog from PHA's President: The Fifth World Symposium on PH
  • Spotlight On... PHA Chapters Launch in Illinois, San Francisco and New York
  • Get Smart: Advocating in Everyday Situations; Breathing Your Way to Calm
  • Resources for You! PHA Store Has a New Look
  • PH Community Scoop: Be a PH Superhero: Share Your Story!
  • From the PHA News Desk: Survival Guide as an e-Book?; PHA Receives Highest Charity Rating for 10th Year in a Row
  • Medical Community Bulletin: New PHA Online University Courses Available
  • PH News Headlines
  • Generation Hope Blog: Get Up and Get Moving!

Feb. 20, 2013 - Keep NIH Research Going

  • Blog from PHA's President: Colleen, Specialty Pharmacies and You...
  • Spotlight On... NIH Finds New Clue to Cause of PH
  • Get Smart: State of PHA: An Annual Update from Our President Rino Aldrighetti
  • Living Better with PH: After Diagnosis: Courage to Take the Next Step
  • PH Community Scoop: Bring on the Muscle: Women's Arm Wrestling League Raises Funds for PHA
  • Medical Community Bulletin: Earn Credits on New Respiratory Therapy Courses
  • Also of Interest: 1 Click, $1 for Rare Disease Research
  • PH News Headlines
  • Generation Hope Blog: I Am What I Am Because of PH

Feb. 6, 2013 - New Tools for Newly Diagnosed

  • Blog from PHA's President: From Orlando to Istanbul...
  • Spotlight On... New Tools for Newly Diagnosed Patients
  • Get Smart: State of PHA: An Annual Update from Our President Rino Aldrighetti
  • Website Discoveries: Things I Found by Kathryn Frix: PHA Daily Beat News Feed
  • PH Community Scoop: Say, "I Love You" with a Gift of Hope
  • From the PHA News Desk: What's Ahead for PH Advocacy?
  • Medical Community Bulletin: New Clinical Trials Posted
  • Also of Interest: Celebrate New Life Through Transplant
  • PH News Headlines
  • Generation Hope Blog: Sometimes Plans Have to Change

Jan. 23, 2013 - Dream It, Fund It, Do It

  • Blog from PHA's President: PH + [Your Condition Here] + People Who Understand
  • Spotlight On... Make Your Idea a Reality
  • Get Smart: Newly Diagnosed? What You Need to Know
  • Living Better with PH: Starting Out the New Year Right: Making a Commitment to You!
  • PH Community Scoop: Get Involved! Rare Disorders Without Borders
  • From the PHA News Desk: End of Year Gifts Top $95,000
  • Medical Community Bulletin: A Second Chance at Congerence 2012
  • PH News Headlines
  • Generation Hope Blog: A New Year, Let's Reflect!

Jan. 9, 2013 - New Beginnings for 2013

  • Blog from PHA's President: An Important New Direction for PHA ...
  • Spotlight On... Get Covered, Get Connected
  • Get Smart: Newly Diagnosed? What You Need to Know; Restorative Yoga for the PH Patient
  • Things I Found by Kathryn Frix: PHA Classroom News Feed
  • PH Community Scoop: PH Kids Spread the Love ... to Each Other
  • From the PHA News Desk: It's Not Too Late to Support PHA's End of Year Appeal
  • Medical Community Bulletin: Scientific Sessions Available on PHA Online University
  • Also of Interest: Medicare Advantage Disenrollment Period Jan. 1 - Feb. 14
  • Video Spotlight: New Videos on Associated Diseases
  • PH News Headlines
  • Generation Hope Blog: What Are You Eating?

 

 
 
 
 

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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.