The basics on Who/What/Where/When/How/Why on starting a support group for pulmonary hypertension patients and caregivers. Also, ideas on how non-profit organizations can help individuals in the community.

1. {{
StartingStarting
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SupportSupport
GroupGroup

2.  Four women around a kitchen table in FloridaFour women around a kitchen table in Florida
 Three patients and one family memberThree patients and one family member
 Originally to end isolation common to rare disease,Originally to end isolation common to rare disease,
but they had lofty goals…but they had lofty goals…
The Pulmonary Hypertension Association…The Pulmonary Hypertension Association…
Founded 1990Founded 1990

3. OurOur missionmission is to find ways to prevent andis to find ways to prevent and
cure pulmonary hypertension, and to providecure pulmonary hypertension, and to provide
hope for the pulmonary hypertensionhope for the pulmonary hypertension
community throughcommunity through supportsupport, education,, education,
research, advocacy and awareness.research, advocacy and awareness.
Our Mission…Our Mission…

4. Anyone whose life has been intruded upon byAnyone whose life has been intruded upon by
this illness hasthis illness has the right to fight backthe right to fight back as muchas much
or as little as they are physically able andor as little as they are physically able and
willing to do.willing to do.
A Guiding PrincipleA Guiding Principle

5.  Isolation is commonIsolation is common
with rare diseasewith rare disease
 Not many people “getNot many people “get
it” or understandit” or understand
 PulmonaryPulmonary
hypertension ishypertension is
relatively new – sorelatively new – so
information medicalinformation medical
professionals orprofessionals or
websites provide canwebsites provide can
be outdated,be outdated,
inaccurate… andinaccurate… and
frightening!frightening!

6. Finding another person who “gets it” can make aFinding another person who “gets it” can make a
huge difference in fighting back and living wellhuge difference in fighting back and living well
The Pulmonary Hypertension Association defines a supportThe Pulmonary Hypertension Association defines a support
groupgroup as two or more people coming togetheras two or more people coming together with thewith the
shared goal of support, information and hope.shared goal of support, information and hope.

7.  WhoWho …is your intended audience?…is your intended audience?
……do you have speak at meetings?do you have speak at meetings?
 WhatWhat …are your goals?…are your goals?
 WhenWhen …do you bring people together?…do you bring people together?
 WhereWhere …do you meet?…do you meet?
 HowHow …do you find patients/caregivers?…do you find patients/caregivers?
…do you find sponsors for food/speakers?…do you find sponsors for food/speakers?
……do you run your meetings?do you run your meetings?
……do you lead your group?do you lead your group?
Before Planning, Ask Yourself

8.  WhoWho …is your intended audience?…is your intended audience?
……do you have speak at meetings?do you have speak at meetings?
 WhatWhat …are your goals?…are your goals?
 WhenWhen …do you bring people together?…do you bring people together?
 WhereWhere …do you meet?…do you meet?
 HowHow …do you find patients/caregivers?…do you find patients/caregivers?
…do you find food/speakers?…do you find food/speakers?
……do you run your meetings?do you run your meetings?
……do you lead your group?do you lead your group?
Before Planning, Ask Yourself
PHA Can Help
We surveyed
groups and can tell
you the most
common options
for times, dates,
speakers and more!
We can advertise
your meetings to
our members
We can help pay
for food at
meetings

9. We also have
comprehensive educational
materials to help you start
your group…

10. So back to theSo back to the
originaloriginal
questions….questions….

11.  WHY do you really want toWHY do you really want to
start this group?start this group?
 To meet others?To meet others?
 To get support?To get support?
 Most PH Support Groups areMost PH Support Groups are
unified in the goal of support,unified in the goal of support,
that’s a giventhat’s a given
 But 90% also want educationBut 90% also want education
 70% want their groups to get70% want their groups to get
involved in the greaterinvolved in the greater
community (advocacy,community (advocacy,
fundraisers, etc.,)fundraisers, etc.,)
Why?Why?

12.  WHO are the people youWHO are the people you
want to have attendwant to have attend
meetings?meetings?
 patients and caregivers;patients and caregivers;
 families and friends;families and friends;
 often doctors andoften doctors and
nurses attend, speaknurses attend, speak
and supportand support
Who?Who?

13.  WHERE do you meet?WHERE do you meet?
 Over 60% of PHOver 60% of PH
Support Groups meet atSupport Groups meet at
hospitals;hospitals;
 Others in libraries,Others in libraries,
churches and other freechurches and other free
spaces.spaces.
 Many use restaurantsMany use restaurants
for special occasionsfor special occasions
and celebrations.and celebrations.
Where?Where?

14.  WHEN does your groupWHEN does your group
meeting?meeting?
 Saturday afternoonSaturday afternoon
(lunch) is the most(lunch) is the most
common time and day ofcommon time and day of
week.week.
 Some groups meetSome groups meet
weeknight, evenings.weeknight, evenings.
 Rarely meet on SundayRarely meet on Sunday
(religious observation)(religious observation)
 Groups usually meetGroups usually meet
6x/year or even monthly;6x/year or even monthly;
can meet quarterly andcan meet quarterly and
sometimes 2x yearsometimes 2x year
When?When?

15.  HOW do you put the firstHOW do you put the first
meeting together?meeting together?
 How do you findHow do you find
patients?patients?
 How do you find aHow do you find a
space?space?
 How do you run theHow do you run the
first meeting?first meeting?
How?How?

16. We will mail outWe will mail out
save-the-datesave-the-date
postcards withpostcards with
your meetingyour meeting
information toinformation to
our patients andour patients and
caregivers in yourcaregivers in your
area.area.
How can PHA help you find patients?How can PHA help you find patients?

17. We’ll set up a group website for your group and you’llWe’ll set up a group website for your group and you’ll
find patients from PHA’s high web trafficfind patients from PHA’s high web traffic

18.  We can give you ideas of what’sWe can give you ideas of what’s
common and what’s proven to workcommon and what’s proven to work
from ourfrom our experienceexperience andand interactionsinteractions
with 340 support group leaderswith 340 support group leaders
 We can connect you with other leadersWe can connect you with other leaders
directly through Facebook and Yahoo!directly through Facebook and Yahoo!
How can PHA help youHow can PHA help you
find a space and runfind a space and run
meetings?meetings?

19. PHA has answers and ideas inPHA has answers and ideas in
our Support Group Leaderour Support Group Leader
ManualManual
Get your Leader Manual and moreGet your Leader Manual and more
support:support:
SupportGroups@PHAssociation.orgSupportGroups@PHAssociation.org