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Guide to PHCentral
Welcome, welcome, welcome to PHCentral!
PHCentral is a place for you to gather basic medical information about pulmonary hypertension, connect with other patients and families, find support, share tips for living with a chronic illness, read and share personal stories, obtain advice from our ask the disability and insurance experts and have some fun along the way.
If you’re new to this site, please take a few minutes to see what we have to offer.
An often overlooked yet important concern is the emotional well-being of chronically ill patients, caregivers and friends. PHCentral addresses this issue by providing our visitors with support resources on the site, on the Internet and in their own community. We also try to connect people online through email lists, diaries, message boards and chat sessions.
Our Support System Includes:
Support Group Listings
- List or find a PH support group near you.
Patient / Caregiver Diaries
- Journals written by PH patients and caregivers who wish to share their lives with others
PH Friends Photo Album
- This page is filled with old and new PH friends. We’ll be happy to add your photo to our album.
Tips & Tricks
- Information and tips for making your life a little easier; a place to share practical and useful tips with others.
- Things you should know but probably don't.
- Articles on many subjects written expressly for PHCentral.
- Travel tips and information for patients on supplemental oxygen.
- Photos and stories of friends we’ve lost.
- A showcase of arts and crafts by PH friends.
- Patients share their stories and photos of the furry, feathered and scaly pets that enrich their lives and give them comfort.
- Here you will find links to other websites and organizations we think you might find useful. If you find a site you think would be a good addition to PHCentral, drop us a line.
PHCentral's medical section is provided to explain the basics about pulmonary hypertension, the diagnostic process and available treatments. Although we do try to keep current, the information you find here may be incomplete. We strongly urge site visitors seeking the latest medical advice and treatment options for PH and any of the diseases associated with PH to gather information from a variety of reputable sources.
- Intro to section
- What is PH? (PH or PAH?)
- The Diagnostic Process
- New Approaches
- Find a Specialist
- Locate a Clinical Trial near you
- PH Glossary
- Find current Scientific Literature
Insurance Matters (formerly under Action Central)
- We have compiled a list of useful resources you will want to investigate if you have questions about private or government medical insurance coverage. We cover health insurance basics as well as U.S. government sponsored health insurance plans. You will also find a number of articles written by our resident guru Alan Harder on the social security / disability system and several others written expressly for PHCentral.
Assistance Programs (formerly called Financial Topics under Action Central)
- Discussions and help navigating the disability system in the U.S. Other resources to help those in need of financial assistance.
Our newsroom is open Monday through Friday, rain or shine to bring you the latest in PH news and other health matters of interest to you. You will also find relevant news items at the bottom of medical, action and financial pages.
One of the hardest things about living with chronic illness in general and Pulmonary Hypertension in particular, is the isolation. You will find many ways to meet and share with others here including:
- Sign up for our private ListServe email forum moderated by a team of dedicated PHC volunteers to become part of a vibrant, online community.
- On any day or evening of the week, you just might find someone in chat looking for a kindred spirit. The door is always open. A chat schedule is available and will be announced on PHFriends and the public message board so you’ll want to check there too.
- We are a small, grass-roots organization and we do respond to emails promptly. Tell us what you think – what works and what doesn’t. Please share with us what you like about the site and ways to improve it. This site is for you.
- Find a support group in your area.
There are things you can do to help yourself, your community and the furthering of PH research. This section contains:
Intro to section
- Learn why you benefit by becoming involved.
Legislation You Should Know About
- From time to time, we bring to your attention a bill that is before Congress or the Senate and ask you to write to your Representatives or Senators to take a position.
Social Security & Disability
- If you’re trying to decide how to proceed with social security and/or disability, you’ll find a wealth of information here.
- Learn why it’s important to choose a PH specialist for your care and how to get the most out of your doctor visits.
Contact the Action Desk
- You’ll find FAQs here on social security / disability issues and email links to our experts for personal attention.
You will find links to many other online resources on the following topics: