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Pulmonary Arterial Hypertension

(Primary Pulmonary Hypertension)

           

 

PAH/PPH Support Groups

Alabama

Alabama P H Support Group
251-452-4620
This is a new group. The first meeting was April 27, 2002 at St. Thomas Catholic Church Parish Center in Chickasaw, Alabama (juct north of Mobile).

Arkansas

Arkansas P H Support Group
501-354-3516
They are committed to helping newly diagnosed PH patients as well as the PH patient that has had this diagnosis for some time. They are a very closely knit group that strives to make a difference in PH patients lives.


Arizona

Arizona PH Support Group
602-944-1199 ext 250
or 800-232-1199 ext 250
This support group for pulmonary hypertension is open to patients, family members, friends, and caregivers. They provide emotional support, education, and resources for PH. Meetings are held every other month in Phoenix, and Tucson. Please contact Mandy Kimbrough for meeting times and locations, or to be placed on their mailing list. Thank you for your interest.

California

Northern California PH Support Group
408-0723-8955
The Northern California Support PPH Support Group covers anywhere from as far down as Fresno to the Oregon border. The group meets the 2nd Saturday of each month at 11am till 2pm all year long at a local church in San Jose. They are a diverse group of people who come together for the same purpose, to learn how to LIVE with PH through friendship and education.


Sacramento PH Support Group
Debbie Baugh
They are a brand new support group for Northern California. They meet every other month on the third Saturday from 1:00 to 3:00. They meet at the UCD Med Center in Sacramento, California.


S. CA Support Group
Joy Beckman or Candi Bleifer (310)222-3560 (818)752-8384
The Southern California Support Group covers all of S. Ca. including Ventura, Los Angeles, Orange, Riverside, San Bernardino, Riverside and San Diego Counties. They generally meet four times a year, on Saturdays from 11 to 2 pm at the St. John's Building at Harbor-UCLA Medical Center in Torrance, CA.


So. Cal Inland Empire Support Group
(800) 622-1820, ext. 7610
The group covers the San Bernardino and Riverside counties. They meet the first Saturday of every other month at St. Bernardines Medical Center in San Bernardino at the Matich Conference Center. They encourage PPH patients and their family members to attend for emotional support and information sharing. The meetings are from 11 a.m-2 p.m and flyers are sent out by Gentiva.

Colorado

Southern Colorado Pulmonary Hypertension Group
Cheryl Massaro or Pat Patterson
Phone: 719-372.3305 or 719-637-1244

Founded in January 2000 by Stacy Durham (who succumbed to PH August 2003) and Julie Morgan, the Southern Colorado Primary Pulmonary Hypertension Support Group meets on the third Sunday of each month (refreshments provided by Accredo Therapeutics).

Meetings typically include educational, business, and/or social segments, with quarterly potluck and holiday gatherings!
Meetings are held in Fellowship Hall on the lower level of First Lutheran Church, 1515 North Cascade Avenue, Colorado Springs, at 1:00 p.m. Handicap accessible parking and elevator are available; enter through paved alley entrance.
Patients, their caregivers, and their friends come from around the Pikes Peak Region as well as Canon City, Pueblo, Denver, and even New Mexico! Join in the camaraderie and loads of fun!

Connecticut


Florida

Port Charlotte Florida PH Support Group
Penny Engel 941-429-4908
They meet once a month. Meetings let them get aquainted with some new people and just talk over issues. Acreedo will be providing refreshments. Call for directions.


Sarasota, Florida PPH Support Group
Penny Engel 941-766-9812


South Florida PH Support Group
Donna Rogers or Jose Iglesias 1-800-955-5909 EXT 268
MEETS THE 2ND SATURDAY OF EVERY MONTH FROM 2P-3P. AT ACCREDO TX. INC. FORMERLY GENTIVA HEALTH SPS, 5249 NW 33RD AVE. BLDG #6, FORT LAUDERDALE 33309.
CALL OFFICE BETWEEN 9AM AND 5PM FOR DIRECTIONS


Tampa Bay Area PH Support Group
Bill March 813-634-1040
The Tampa Bay support group tries to meet monthly, at various locations throughout the Tampa Bay area. For dates and times of scheduled meetings, contact Bill March.

Georgia

Georgia Pulmonary Hypertension Association Support Group
Sally Maddox Phone: 706-290-0455
This group covers all of Georgia. They meet 4 times a year, usually at Gentiva in Marietta or the Medical College of Georgia in Augusta. All are welcome.

Indiana

IndyPH
Indianapolis Pulmonary Hypertension Support Group
317-709-0799
indyph.support@gmail.com
www.indyph.com

Kansas

Kansas City Area PPH Support Group
800-569-5451
The Kansas City area support group meets in Kansas City every other month.



Wichita Area PH Support Group
Marye Raux 316-262-3468
They meet in Wichita, Kansas every other month.

Louisiana

Louisiana Support Group

Phyllis Wilkinson at Gentiva 800-805-1820
They try to meet every 3 months at the Gentiva building in Metaire. They have lunch together and share stories. Please come join them...

Massachusetts

Maine

Minnesota

Minnesota Support Group
Cathy Severson


Minnesota Metro Area Support Group for PH
Cindy Wangerud 763-757-4608

Minnesota Metro Area Support Group for PH Patients, Caregivers, friends and family. Stephanie is the e-mail contact. This support group is dedicated to helping PH Patients, Cope and Understand their illness along with caregivers and friends and family.

Missouri

Greater St. Louis
Janie Summers or Diane Adkins (800)285-7384 (314)770-2427
Open to all interested, related, and burdened.

Nebraska

Omaha Nebraska Area PH Support Group
800-569-5451

They meet in Omaha Nebraska every other month.

New Hampshire

New Jersey

New Jersey Support Group
Jennifer Mettille 609-965-8862
Newly started group consisting of about four members for the South Jersey area. Meetings are held once a month either the second or last Sat. of the month. Held down the shore area in Pomona at the Betty Bacharach Rehab. Hospital.   


PPH Research Foundation Jason Gellis
Betty Nixon 609-893-4071
They do fundraisers for Research for PPH All monies raised goes to Dr.Robyn Barst at Childrens Hospital (Columbia Presbyterian) Bronx,N.Y. In the last year and a half they have raised almost $40,000.00. They only have a small group of people who help me with their events. They are located in New Jersey. If anyone would be interested in helping, contact them at the above email address. They also welcome anyone to Jason's web page. They raise the money in his name as he suffers from PPH. www.homestead.com/JasonGellis   

New Mexico
High Desert Breathers
Julie strand 505-345-3336 or 800-872-3336


New Mexicans living With PH
Jennifer Radley 505-235-2663
Support and information for newly and post diagnosed patients living with Primary Pulmonary Hypertension in New Mexico. Help with finding care and specialist that treat PPH and SPH.

Nevada

Northern Nevada/California Support Group
Ann E. Fullerton 775-323-3341
Their group covers the Northern Nevada - Reno area and North Eastern California. They don't currently meet on a set schedule - but they have occasional lunches and guest speakers. Everybody welcome.

New York

Albany Area Support Group
Maryjo Rinkewich 800-677-2244 x 6822
Currently meeting periodically at Albany Medical Center.


Long Island, NY PH Support Group
JoAnne Schmidt 631-427-4586
The NY group meets every other month at Winthrop Medical Center in Mineola, NY. All are welcome... friends, family, medical personnel. Contact JoAnne for more information about the next meeting.


Mount Sinai Pulmonary Hypertension Support Group
Ann Marie McDonald 212-241-1671
The group meets every other month at Mount Sinai Medical Center with Dr Michael Poon speaking and answering questions. Everyone is welcome and refreshments are provided.

Ohio

Cincinnati PHA Support Group
Laura Blanchard, RN (513) 558-6300
They are new but growing FAST! Come help them out!


Ohio Regional PH Support Group
Bev and Ted Nedelman

Meeting Notice
July 25, 2004, 2:00
Location: Southwest General Helath Center, 18697 Bagley Road in Middleburg Hts. Free parking in the garage. Anderson Hall is located in the basement. Take the hospital elevator off the parking garage to the basement level. Turn left. Signs will show the location. Not far to walk.
Speaker: Dr Constance Jennings MD, Director of Pulmonary Vascular Program of Cleveland Clinic
Topic: Updates on new treatments being tested.
Bring a list of questions and meet great people. Invitations are sent out by Accredo and they also supply the refreshments.


Northwestern Ohio Pulmonary Hypertension Support Group
Nancy or Rebecca
Phone: 419-843-3579 or 419-882-3060

Join them for their monthly meetings. Any patient, their family members, and caregivers are welcome to attend. Meet with others who have this disease, or have a loved one with Primary Pulmonary Hypertension.
Meetings are usually the last Monday of each month. There are exceptions to this, especially around the holiday season.
Meetings are held at:
Rossford United Methodist Church
270 Dixie Highway
Rossford, OH 43460

Please call Nancy at 419-843-3579 or Rebecca at 419-882-3060 to verify meeting date, get directions, or if you have any questions.

Oregon

Central Oregon PHA Support Group
Robbin Murray or Jamey at Accredo
Phone: 1800-647-2448

Description: Monthly Meetings at Bradley D's in Bend OR. Second Tuesday of the month(except Nov,Which will be on Thursday the 13 of Nov). Patients and caregivers are welcome.


Portland P H Support Group
Vicky Tody, RN (800) 647-2448
A new support group recently formed to serve PH patients and caregivers in the southwest Washington and northwest Oregon regions. All are welcome, though, so please come!

Pennsylvania

Greater Lehigh Valley and Pocono Area PH Support Group
Joan Stevenson -- 610-432-8011
They meet the fourth Satuday every other month in Conference Room 3AB at Sacred Heart Hospital, 421 Chew Street, Allentown. Accessible off Rte 22 at 7th St. South exit. Free covered parking at the SH garage on 5th and Chew. Fully handicapped accessible.


Delaware Valley (DelVal) PH Support Group
(SE PA, central/S NJ, DE, and N MD)
Coleen Makovicz - (215) 953-7675
The DelVal support group covers southeastern PA, south Jersey, northern MD, and northern DE. It normally meets  the second Saturday of each month from 1:00-3:00p.m. at the Church on the Mall in the Plymouth Meeting Mall.


Harrisburg & Environs (Susquehanna Valley) Support Group
Jane Severs (Gentiva Health Services) (800) 677-2244 extension 7438
The Susquehanna Valley support group covers Harrisburg, PA and surrounding communities.


Mercer Area PAH Support Group
Contact: Betty Lait - Support Group Leader
Phone: 724 342-1223

Their support group meets the 4th Friday of each month (unless otherwise stated) at UPMC - Horizon in Farrell, PA You may also contact Merle Reeseman at 724 458-5573


Pittsburgh's PHA Support Group
Sharren Yamron (412) 829-0069
The Pittsburgh Support group is helping those with P H in the Tri-state area of Pennsylvania, Ohio and West Virginia. They have been meeting since 1995 and meeting are held at both the University of Pittsburgh Medical Center, in Pittsburgh and Olsten Health Center in Wexford. With both education and support information the primary goals of the group. They meet bi-monthly and anyone interested in meeting should contact Sharren Yamron at (412) 829-0069. The 2000 year meetings should be coming up soon with announcement to be made.

 

Rhode Island

Tennessee

PH Support Group - Mid-South Chapter
Contact: Barbara Thompson
Phone: (901) 266-0507

Description: 2828 Stage Center Cove - Bartlett, TN 38134
Serving West Tennessee, East Arkansas, North Mississippi, and Missouri boothill.
Newsletter

The goal of the PPH Support Group is to end the isolation of living with Primary Pulmonary Hypertension. By bringing together the people who know and understand what it is to deal with PH, they are creating a stronger foundation for all involved in the PH community.

They meet the first Thursday of every other month (odd numbered months; 1, 3, 5, 7, 9, & 11th) except for this month of May. Classic Hall was already booked.

Directions to Classic Hall:
From Interstate 40 East, you will exit at the Sycamore View/Bartlett exit. Turn left (north), the street name will change from Sycamore View to Bartlett Blvd. but continue on to Stage Road & make a right (east), go past Ryan's Steak House (on your right) to Stage Center Drive (between Sherwin-Wms & Mapco) & turn right (south), go around sharp curve to the right & Stage Center Cove will be on your right. Classic Hall is the first building on the right - 2828 Stage Center Cove.

Texas

Houston P H Support Group
Angie Eldam (281)565-0032
They currently meet on the third Saturday of the odd months at their local Accredo Office @ 9307 Kirby Drive in Houston (by the Astrodome) from 2:00PM to 4:00PM


PH Support Group - Tyler Chapter
Melissa Isham (903) 825-7102
Support group for patients,families,caregivers and friends affected by PH


North Texas
Amy Frazier 214-327-4321
For everyone in the Northern Texas area. Come and join them. Bring your friends and/or family members... ALL are welcomed.


North Texas PH Support Group
Sheila Williams 817-838-8312
They are here for the North/Central Texas area..... Please feel free to come. Bring your family and friends. Refreshments are provided.


Greater Victoria area Support Group
Alex Flipse A small group in south central Texas. Too far from San Antonio and even further from Houston. if you fit in this area, please docntact me by email.

Vermont


Washington

Kitsap County's Lupus Support Group
Contact: Teri
Phone: 360-613-2538

Their Lupus Support Group meets in the Aspen Room at Harrison Hospital, Bremerton,Washington
Meetings will be the first Saturday of the month - from 1-3


Olympia Support Group
Jamie Mattson -- Phone: 800-647-2448
Vickie Heywood (360) 866-4352
http://home.earthlink.net/%7Edtpchick/flofashions/
The South Puget Sound Primary Pulmonary Hypertension support group. They meet in the months between the support group sessions held every other month in the Seattle area. Description: Their aim is to support, so bring your caregiver, strengths, frailties, and questions. They all try to help each other as best they can! They meet monthly, depending on the season.


Pulmonary Hypertension Support Group
Jamie Matson, LPN, 800-647-6448
For meeting dates and locations, you may call Jamie Matson, LPN, at 800-647-6448 to get on her mailing list for meeting notifications.

Wisconsin

The Milwaukee P H Clinic & Support Group
Pam Guyer 262-243-4660
Group meets in conjunction with the monthly Pulmonary Hypertension Clinic run by Dr. Dianne Zwicke. Agenda usually includes time for each member to update on what is happening with them; periodic presentations by speakers or specialists; and occasional pot luck lunches. A light lunch is provided at no charge by Accredo Therapeutics.
Meeting Notice -- 4th Monday of every month -- 12:00 - 1:30
St. Luke's Hospital Pulmonary Hypertension Clinic, 2900 W. Oklahoma Ave.
Milwaukee, WI 53215



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