PPH Support Groups

Recent studies have shown that patients who participate in support groups are more likely to feel better equipped to handle the stress of chronic and progressive illness, and sometimes to extend the length of their lives. It has also been shown that patients are more likely to be able to deal with complicated medical routines and therapies, if they connect regularly with other patients who are in similar circumstances for discussion and mutual support.

We have provided for a list of support groups all across the United States for those with PPH.  You may want to contact the one in your area.

Alabama

Alabama PPH Support Group

251-452-4620

This group first met April 27, 2002 at St. Thomas Catholic Church Parish Center in Chickasaw, Alabama (just north of Mobile).

Arkansas

Arkansas PPH 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 PPH 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 PPH 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 PPH 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

Connecticut PHA Support Group

Liz Mahoney, Community Advocate , Accredo Therapeutics

165 Forest Street Marlbrough MA 01752

(800) 343-9813 ext 236

Meetings are generally the first Saturday of the month every other month.

The meetings are open to anyone affected by primary pulmonary hypertension, their friends and family. Lunch and dessert are provided.

Florida

Port Charlotte Florida PPH 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 PPH 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 PPH 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

Indiana PPH Support Group

Contact: Roxanne Saverino 317-887-8471

Meet the second Saturday of every month from 10:00 a.m. to 11:30 a.m..

Their first meeting was Saturday, January 13, 2001 and they had 21 attendees. The majority were from Indianapolis but they had people from Muncie, IN Huninton, IN and as far away as OHIO.

Kansas

Kansas City Area PPH Support Group

Bree Rubel 913-599-2989/800-569-5451

The Kansas City area support group meets in Kansas City every other month.

Wichita Area PPH 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 Metairie. They have lunch together and share stories. Please come join them.

Massachusetts

Boston Area Support Group

Pat Owens owensph@aol.com

Group meets monthly at various Boston Hospitals. The group is open to anyone affected by pulmonary hypertension, their friends and family.

Maine

Maine PPH Support Group

Jeanette Morrill

Group meets every other month (except for July and August)

The meeting is open to anyone affected by pulmonary hypertension, their friends and family. Dinner and dessert is provided.

Minnesota

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 PPH Support Group

Bree Rubel 913-599-2989/800-569-5451

They meet in Omaha Nebraska every other month.

New Hampshire

New Hampshire Support Group

Judy Goldthwaite 603-474-9917 and Marcia Deserres 978-388-3602

Meetings are held every other month at Border's Bookstore in Concord , NH. Border's is located at the Fort Eddy Shopping Plaza, exit 13 off Route 93.

The meeting is opened to anyone affected by pulmonary hypertension, their friends and family. If you are planning on attending, please call either Judy at 603-474-9917 or Marcia 978-388-3602.

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 PPH

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 PPH 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!

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. Patients and caregivers are welcome.

Portland PH 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 Saturday 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.

Rhode Island

Rhode Island Hospital Support group

Chris Simoneau 508-393-9089

Newly formed support group at Rhode Island Hospital. They hope to contact many PH'ers in the southeastern, central MA area as well as those in Rhode Island and Eastern CT. Their meeting is open to all--patient's, family, friends, caregivers-- anyone affected by PH. Chris may be contacted at the above numbers for directions to the hospital.

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 PH 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.

Vermont

Vermont Support Group

Brad Maher - 802-864-3684

Group meets every other month (except for July and August) at the Fletcher Allen Cardiology Office, Dorset Street, Burlington.

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

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 potluck 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

Related Information:

• Spiritual and Psychological Support

• PPH - Questions for Your Doctor