On Grief and Giving Back

2019-06-27T18:41:14+00:00June 26th, 2019|

This article originally appeared in the June issue of Pathlight. Jackie Woosley is a Pulmonary Hypertension Association (PHA) support group leader who also facilitates the monthly PHA Bereavement Telephone Support Group. She was the caregiver for her adult daughter Karen, who passed away in 2016, and has taken on multiple volunteer roles with PHA to carry

Volunteer Spotlight: Iowa Support Group Learns About Palliative Care

2019-06-27T19:21:50+00:00June 26th, 2019|

Karen Fragale and Traci Stewart, Pulmonary Hypertension Association support group leaders of the Pulmonary Hypertension (PH) Iowa Support Group, hosted a meeting on palliative care on June 8. At the meeting, Jen Krier, a palliative care nurse from Mercy Clinic in Iowa, offered insights to the group about palliative care, including how palliative care

Volunteer Spotlight: Cardio Rehab Speaker and Therapy Pooch Present at Support Group Meeting

2019-06-13T16:18:37+00:00June 12th, 2019|

Nicole Creech, support group leader of the Pulmonary Hypertension Association (PHA) Lexington, Ky., support group, recently hosted a meeting on cardiopulmonary rehabilitation featuring speaker Katelyn King, MSEP, pulmonary rehabilitation coordinator at the University of Kentucky/Gill Heart & Vascular Institute in Lexington. Katelyn brought with her special guest Carmine the Therapy Dog whose owner is

PHA Launches Three New Facebook Groups to Support the PH Community

2019-06-06T14:28:43+00:00June 5th, 2019|

The Pulmonary Hypertension Association (PHA) has created three new Facebook groups to provide support for the pulmonary hypertension (PH) community! PHA’s Facebook groups provide members with a supportive space to share stories, updates, goals, worries and hopes, and ask questions and affirm others on their PH journeys. Members can share this information with others

Learning to Live Your Best Life with PH: Join PHA on the Road in 2019

2019-05-30T16:58:16+00:00May 30th, 2019|

The Pulmonary Hypertension Association (PHA) is excited to announce dates and cities for two PHA on the Road: PH Patients and Families Education Forums in 2019. PHA on the Road, a program of the PHA Community PH Education Fund,* is a unique opportunity for individuals with pulmonary hypertension (PH) and their families to

NORD Launches Caregiver Relief Program

2019-05-30T16:59:29+00:00May 30th, 2019|

Caregivers who help individuals with rare diseases are often unpaid family members who rarely get a day off. In recognition of the significant time, attention, patience and dedication that caring for a loved one with a rare disease demands, the National Organization for Rare Disorders (NORD) recently launched the Rare Caregiver Respite Program. Designed

New Brochure Aids Those Coping with the Loss of a Loved One

2019-05-02T15:13:39+00:00May 2nd, 2019|

The Pulmonary Hypertension Association (PHA) is pleased to offer a new brochure, In Your Time of Sorrow: A Bereavement Resource, available as a free download online at www.PHAssociation.org/Bereavement. In Your Time of Sorrow explains that bereaved family members — those experiencing the death of a loved one — are not alone and that they

Openings Still Available for Webinar Participation in FDA Meeting to Gather Input on Living With a Rare Disease

2019-04-11T15:59:10+00:00April 11th, 2019|

The U.S. Food and Drug Administration (FDA) reports that the in-person registration for their April 29 public meeting “Patient Perspectives on the Impact of Rare Diseases” is full. However, interested persons can still register to attend via webcast. In addition, the FDA invites those interested in attending in-person to join the waitlist. The FDA

PHA Helps Highlight the Importance of Organ Donation During National Donate Life Month

2019-04-04T18:35:43+00:00April 4th, 2019|

April is National Donate Life Month and all month long the Pulmonary Hypertension Association (PHA) is bringing awareness to transplant recipients, individuals still on the waiting list for a transplant, donors and donor families and registered donors. The awareness month, established in 2003 by Donate Life America, supports organizations nationwide in their efforts to