Thursday, February 28, 2013

Rare Disease Day

There are 7,000 rare diseases but only 400 rare disease treatments. Share a rare disease fact in honor of Rare Disease Day today. www.rarediseaseday.us

Are you PH Ready to Improve your Quality of Life?

Are you PH Ready to Improve your Quality of Life? Making small changes in daily activities & lifestyle can make a big impact in how PH patients feel. Learn more with PH Ready http://www.phassociation.org/PHReady

Wednesday, February 27, 2013

PH Diet and Nutrition

Just as diet and nutrition were concerns before your PH diagnosis, pulmonary hypertension patients must often make an extra effort to be conscious of what they eat. Certain foods and vitamins might interact with medication, contribute to edema (the buildup of excess body fluid), or increase nausea and discomfort. Learn more with PHA resources.

Supporting PHA's Work

We are a COMMUNITY OF HOPE. By working together, we’re making great strides against PH! There are a lot of ways to support to PHA’s work to find a cure – what’s your favorite way to fight back? Learn more about the many ways you can contribute to PHA’s work at www.PHAssociation.org/Donate.

Join us for Patient Support Group Call

Join us RIGHT NOW for the Monthly Patient Telephone Support Group Call https://cc.readytalk.com/r/h969ugfdxdn9  from 8-9pm EST/5-6pm PST

Tuesday, February 26, 2013

How do you raise awareness for PH?

What ways have you raised awareness of PH? Comment and Tell Us More :) and here are some tips for how you can get keep raising awarenss : http://www.phassociation.org/Awareness/CommunityEducation
 
 
 

Monday, February 25, 2013

Watch Rare Disease Day Video

Check out the official video for this year’s Rare Disease Day! Together, from every country and every rare disease, our voices will be heard. Watch video

Faces of Pulmonary Hypertension: Teen Caregiver Karel Schulz

"When mom was diagnosed, I wanted to push people away. I didn't want to talk about it. To this day I don't want too, but I still attempt to be a good caregiver. For a teenager, it is a hard thing to talk about."

Read Karel’s story | Join us for webinar about coping today (Monday) at 4 p.m. ET/1 p.m. PT

Saturday, February 23, 2013

Newly Diagnosed? Get Your Questions Answered

Newly diagnosed? Have lots of questions and concerns? Not sure what kind of questions to ask?
Register for the NEW e-course series, The Newly Diagnosed Self Study: PH Ready, to get all the information you need to navigate your new PH diagnosis.

Register today

Friday, February 22, 2013

TAKE ACTION: Do The New Members of Congress Know About Pulmonary Hypertension?

There were 96 new Members of Congress who were sworn into office earlier this year. Do they know what it’s like to live with pulmonary hypertension? Why not pick up the phone and introduce yourself today? If you need a conversation starter, you can help them understand the importance of funding federal health research.

Contact your Member of Congress

Addressing Patient Needs in Specialty Pharmacy Services

PHA, the Caring Voice Coalition and several specialty pharmacies have joined together to form the Specialty Pharmacy Advisory Board, which is dedicated to learning about patients’ specialty pharmacy experiences in order to identify trends and best practices.

Read Colleen Brunetti’s guest blog post to learn more about the formation of the Specialty Pharmacy Advisory Board.

State of PHA Address TODAY!

Don't miss PHA President Rino Aldrighetti TODAY at 2pm ET/11am PT for his Annual State of PHA Update. Hear what's going on in the PH community and what we have in store for this coming year. You will also have the opportunity to ask Rino your burning questions.

Register now!

Thursday, February 21, 2013

Upcoming Patient Telephone Support Group Meeting

Can't make it to your local support group? 
No group near you? Connect with us on Thursday, Feb 28!
This telephone support group is for patients to share their story, provide hope and inspiration, and to learn from one another. Newly diagnosed & long-term patients welcome! Register Now!

Dial-In Number(s): U.S. & Canada:    866.740.1260
Access Code: 5653004
Mark your calendars: these patient calls happen every 4th Thursday of the month at 8pm EST

Pulmonary Hypertension Fact: How Best Treatment for You is Determined

Your doctor will take into consideration the severity of your illness (referred to as your “functional class”) and the results of your cardiac catheterization to help determine which medication is right for you. As your symptoms and pressures change, your doctor may want to adjust the type and dosage of your medication accordingly.

Raise Awareness for Rare Disease Day

75% of rare diseases effect children. Spread the word about the impact of rare diseases. www.rarediseaseday.us

Wednesday, February 20, 2013

PHA’s 2013 PHPN Symposium – Call for Abstracts!

PHA’s 2013 PH Professional Network Symposium will be held September 26-28, 2013, in Arlington, Va. Healthcare professionals in all areas of practice related to pulmonary hypertension are invited to submit abstracts.

As abstract submissions are welcome from both new and experienced healthcare professionals, new authors may request a mentor from the PHPN Symposium Committee by contacting PHPN@PHAssociation.org. All abstract submissions should also be submitted to PHPN@PHAssociation.org.

Deadline to Request a Mentor: April 1, 2013
Submission Deadline: May 15, 2013


View abstract resources and submission guidelines

Make Your Idea Reality! Lantos Grant Deadline Feb. 27

Still thinking about applying for a Lantos grant? Now’s the time – the deadline is one week away. Seize this year’s only opportunity to receive up to $5,000 to carry out an idea to answer unmet needs in the pulmonary hypertension community. As many as 10 grants may be awarded.

Find out more about the program | Listen to a recorded webinar with tips on applying

Parents Support Call Tomorrow

Join us tomorrow at 8:30 p.m. ET/5:30 p.m. PT for our monthly Parents Telephone Support Group call. Connect with other parents of kids with PH for support, encouragement and information sharing. The call lasts one hour; join us for as long as you’d like.

Join us

Tuesday, February 19, 2013

Coping with Your New Pulmonary Hypertension Diagnosis

Coping with a new pulmonary hypertension diagnosis may be challenging. But there are so many things you can do to help you feel your best...

Join us for “After the Diagnosis: Courage to Take the Next Step” for tips for communicating effectively about your PH and ways to maintain good emotional health presented by Janet Pinson, NP.

Register today for our Feb. 25 webinar!

In the meantime, you can start our "PH Ready" e-courses for newly diagnosed patients.

Caregiver Call Tomorrow

This is a reminder of our Caregivers Telephone Support Group call tomorrow at 1:30 p.m. ET/10:30 a.m. PT. Call in toll-free to connect, learn, and share strategies and experiences caring for an adult with pulmonary hypertension. Call lasts one hour; we welcome you to join us for as long as you like.

View call-in info

"I Am What I Am Because of Pulmonary Hypertension"

from Kiara Tatum on PHA's Generation Hope blog...

The Latin proverb says, “Sickness shows us what we are.”  Like the proverb, pulmonary hypertension has taught me exactly who and what I am.  My life drastically changed since the onset of PH symptoms 7 years ago.  I graduated from college and started my career, and then my losses began: financial stability, friends, my home, my car, control and independence.  However, my diagnosis of PH has many positive outcomes as well as negative.

Read more from Kiara

Are you a young adult PHer? We are looking for more bloggers for our Generation Hope blog. Contact Outreach@PHAssociation.org if you are interested and to learn more.

Monday, February 18, 2013

Bayer Applies for U.S, E.U. Regulatory Approval of Riociguat

From FoxBusiness.com...

German chemical and pharmaceutical group Bayer AG said  it has applied for regulatory approval of riociguat in the U.S. and the European Union. The application is for the treatment of chronic thromboembolic pulmonary hypertension (CTEPH) and pulmonary arterial hypertension (PAH).

Read article

Global Community Connection for PHers

Connect with the global PH community online through our email groups, message boards and live chats, or get involved in a support group or association near you!

Connect

Take That Trip of a Lifetime

Is international travel on your bucket list… check out PHA’s resources to help you take the trip of a lifetime without pulmonary hypertension holding you back.

View PHA's travel resources for pulmonary hypertension patients

Friday, February 15, 2013

TAKE ACTION: NIH Research Finds New Clue to Cause of Pulmonary Hypertension

Leaders in pulmonary hypertension research produced one of the top research findings in 2012 funded by The National Heart Lung and Blood Institute (NHLBI) of the National Institutes of Health (NIH). The study suggests that bone marrow-derived endothelial progenitor cells play a role in causing the vascular injury in the lung that underlies PAH.

The NIH funds nearly 30% of the biomedical research done in the U.S., but proposed budget cuts to most federal programs put that research at risk. The cuts would also impact the ability of the Food and Drug Administration to review and approve new PH treatment options and of the Centers for Medicare and Medicaid Services to ensure access to quality medical care.

Take Action Now to Protect NIH Research | Read the study abstract

Medical Professionals: Diagnosis & Treatment Education

Deepen your knowledge of pulmonary hypertension diagnosis and work-up with information in PHA Online University’s Diagnosis & Treatment section. You’ll find fact sheets for all currently available therapies, consensus statements from PHA’s Scientific Leadership Council, information about our Sometimes it’s PH early diagnosis campaign and other practice resources. It’s all at www.PHAOnlineUniv.org/Diagnosis&Treatment.

PHA Offices Closed Monday

Due to the holiday, PHA offices will be closed on Monday.

Thursday, February 14, 2013

Ready to Tell Your PH Story?

Are you PH READY to Tell Your Story?! Check out the webinar: Explaining PH to Friends, Family and Coworkers, by registering for our new program for newly diagnosed patients... PH READY.

Learn more & register now

Give Your Heart This Valentine's Day, Literally!

Happy Valentine’s Day! Tell your special someone how loved they are by making a gift in their honor. Give your heart, literally, by becoming an organ donor. Also, you can support the fight against pulmonary hypertension with a gift to PHA in honor of your loved one.

Wednesday, February 13, 2013

Annual State of PHA Address Next Week

Did you enjoy the State of the Union last night? Ever have a moment during the speech when you wanted to scream through the television and tell the president what you think?

Well, you can talk to the president next week about pulmonary hypertension. The president of the Pulmonary Hypertension Association that is.

State of PHA - An Annual Update from PHA President Rino Aldrighetti
Friday, Feb. 22, 2 p.m. ET/11 a.m. PT
Webinar (Internet and phone)

Every year at PHA takes on a special meaning, and 2012 was no different. This past year was marked by continued progress in the fight against PH through research, education, advocacy and awareness. In this webinar, PHA’s President, Rino Aldrighetti, will discuss the current state of PHA and the growth of the PH community. He will review PHA’s recent accomplishments and share goals for the new year.

Register now

Allied Health Professionals: Join the Network!

PHA's Pulmonary Hypertension Professional Network is a community of over 900 PH-treating allied health professionals dedicated to enhancing communication and professional development, and furthering pulmonary hypertension research and education. 



Learn more and join today!

Already a member? Encourage your colleagues to join | Patients: share with your allied health professionals

Parents Call Next Week

Parents of PH kids! Mark your calendars for next Thursday, Feb 21, to connect toll-free with other parents.

Learn more and register

Tuesday, February 12, 2013

Show Your Support for Rare Disease Research


To click on the "Raise Your Hand" symbol supporting rare disease research, go to the national Rare Disease Day website hosted by NORD:  www.RareDiseaseDay.US. For every click on the Raise Your Hand symbol on the homepage, Lundbeck will donate $1 to NORD's Research Program, up to $10,000.  Read about this on the NORD blog

PHA Supports Caregivers During Heart Failure Awareness Week

Nearly one third of American families have a caregiver providing daily assistance to someone with heart failure. This week PHA joins the American Association of Heart Failure Nurses in recognizing the importance of caregivers during Heart Failure Awareness Week.

Find out more at www.AAHFN.org/Caregiver.

Caregivers Telephone Support Call Feb. 20

Caregivers! Mark your calendars for next Wednesday, Feb 20, to connect toll-free with other caregivers! Details at www.PHAssociation.org/Caregivers/Support

Monday, February 11, 2013

Get Organized!

When it comes to your health, a little organizational effort can have a huge impact!

View and download PHA's Empowered Patient Online Toolkit

11-Year-Old with Pulmonary Hypertension Designs Nike/Doernbecher Sneaker

From Doernbecher Children's Hospital in Oregon...

Fierce. Strong. Fearless. Just like a … chicken. Yep, Oswaldo Jimenez has a power animal, and it just happens to be a scrappy pollito, or “little chicken.” He earned the moniker because of his puckish eating habits as a toddler and the name stuck.

Read the full story

Friday, February 8, 2013

Faces of Pulmonary Hypertension: Lily McGlone

“Every day is a struggle. There are good days, and there are bad days. On the bad days, I can barely hold back tears. On the bad days, I grieve. I grieve for the loss of my daughter's normal life. I grieve for the loss of the memories we will never get to make, because this disease will restrict her. On the good days, I make memories.” --Dianna McGlone, mother and caregiver

Read Lily’s story

A Roadmap for Newly Diagnosed Patients

Are YOU PH Ready? Find out by registering for our program that serves as a roadmap for newly diagnosed pulmonary hypertension patients...

Register now

Support Your Caregiver This Valentine's Day

Want to give your caregiver a Valentine that will help them the whole year? Get them tapped into PHA's resources for caregivers!

Find pulmonary hypertension caregiver resources online

Thursday, February 7, 2013

Organ Donor Day Feb. 14

More than 116,000 Americans, including pulmonary hypertension patients, are waiting for life-saving organ transplants. A single donor can save up to eight lives. This Valentine’s Day, give a gift from the heart by spreading the word about organ donation.

Learn more and encourage organ donation | Learn more about PHA's transplant resources

For Medical Professionals: Free CME in Penn. on Feb. 13

Dr. Harold I Palevsky, MD, Professor of Medicine from the Perelman School of Medicine of the University of Pennsylvania, will be providing an overview of Screening, Diagnosis, and Treatment of Pulmonary Arterial Hypertension in Wyomissing, Penn., on Feb. 13. Program participants are eligible to claim up to 1.5 AMA PRA Category 1 Credits™. Dinner and program are at no cost.

Register

Wednesday, February 13, 2013
Screening, Diagnosis, and Treatment of Pulmonary Arterial Hypertension:  An Overview
Crowne Plaza Reading
Salon AB (Lobby Level)
1741 Papermill Road
Wyomissing, PA

6:00 − 6:30 p.m. — registration and dinner
6:30 − 8:00 p.m. — program

Harold I Palevsky, MD
Professor of Medicine
Perelman School of Medicine of the University of Pennsylvania
Chief, Pulmonary, Allergy, and Critical Care
Director, Pulmonary Vascular Disease Program
Penn Presbyterian Medical Center
Philadelphia, PA

What Will 2013 Bring in Healthcare Changes?

Want to know what healthcare changes are coming up in 2013? Read Coverage Connection to learn about health insurance exchanges, the Medicare Donut Hole, and more!

Wednesday, February 6, 2013

Your Ideas Go To Istanbul

Remember that survey you filled out, “What do patients want from medical research?” PHA's President Rino Aldrighetti went to a conference in Istanbul last week to discuss patients’ needs and wants in clinical trials, starting with information gathered from your answers!

Read all about it in Rino's blog

Celebrate the Love that Brings Us Together

Valentine’s Day is about celebrating the love that brings us together – so this Valentine’s Day, say, “I love you” with a gift of hope that supports PHA’s work to find a cure for pulmonary hypertension.

Make a gift in honor of your loved one for Valentine’s Day

Pulmonary Hypertension Fact: Online Support Chats

Did you know that PHA has online support group chats every day of the week? Check out the schedule and join in today!

Tuesday, February 5, 2013

Ladies Arm Wrestle for the Cause in Minnesota

2013 PHA Special Events are off to an exciting start! Earlier in January, the Minnesota Arm Wrestling League for Ladies (MAWLL) held a benefit for pulmonary hypertension research and services. Competitors with names like Honey Voodoo and Helga Hammerfist battled it out to see whose biceps were tops. Check out the entertaining photo album. Congrats, MAWLL, on a job well done!

Lantos Grants Welcome Replication of Past Successes

Although the Tom Lantos Innovation in Community Service Awards encourage members of the PH community to pursue original ways to advance our cause, not every applicant needs to create an idea from scratch. One largely unexplored purpose of the award is to fund the replication or expansion of established ideas.

With several weeks before the Feb. 27 application deadline, consider the ways you might be able to use a grant to take a good project farther. You might start with these directions or develop your own:
  • Extend it to a new population
  • Offer it in a different geographic location
  • Add a new component that could make the program even stronger
  • Subtract an element from the program and substitute something you think may work better
  • Produce a similar item with a similar purpose (poster, video, etc.), but change the message to make it your own
  • Blend in our new early diagnosis theme
  • Translate something into a different language to reach a new audience
Whatever path you take to a Lantos grant application, keep in mind that the best applications express a clear goal and specific, achievable steps to reach that goal. Take the time to assess what help you may need to carry through on your idea and how you will arrange for needs such as volunteer support, design and printing services. If your idea is to produce something that others can use, be sure to devise a system for distributing the item to the intended audience.

Before you apply, PHA staff are available to discuss ideas you many have. And this year, the grant program provides a new opportunity for applicants with promising applications to receive feedback from the selection committee. In these cases, applications that might need more work have a greater chance to receive funding.

Visit our webiste for more information and for a close look at the list of past Lantos grantee projects.

Monday, February 4, 2013

February is Heart Month!

Congenital Heart Disease (CHD) is a problem with the heart’s structure and function that is present at birth. Five to 10 percent of people with congenital heart disease develop pulmonary hypertension. 

Support our PHers with CHD! Take a moment to learn more about CHD and PH by watching this PHA Classroom video.

Medical Professionals: Presentations from Conference in Latest Journal Online

Weren’t able to attend PHA’s 10th International PH Conference and Scientific Sessions or missed a session? The newest issue of Advances in Pulmonary Hypertension, PHA’s quarterly clinical journal, provides a short summary of some of the current research presented at last year’s conference. To read the award winning abstracts or catch up on the presentations, visit PHA Online University.

Friday, February 1, 2013