{{
StartingStarting
aa
SupportSupport
GroupGroup
 Four women around a kitchen table in FloridaFour women around a kitchen table in Florida
 Three patients and one family...
OurOur missionmission is to find ways to prevent andis to find ways to prevent and
cure pulmonary hypertension, and to pro...
Anyone whose life has been intruded upon byAnyone whose life has been intruded upon by
this illness hasthis illness has th...
 Isolation is commonIsolation is common
with rare diseasewith rare disease
 Not many people “getNot many people “get
it”...
Finding another person who “gets it” can make aFinding another person who “gets it” can make a
huge difference in fighting...
 WhoWho …is your intended audience?…is your intended audience?
……do you have speak at meetings?do you have speak at meeti...
 WhoWho …is your intended audience?…is your intended audience?
……do you have speak at meetings?do you have speak at meeti...
We also have
comprehensive educational
materials to help you start
your group…
So back to theSo back to the
originaloriginal
questions….questions….
 WHY do you really want toWHY do you really want to
start this group?start this group?
 To meet others?To meet others?
...
 WHO are the people youWHO are the people you
want to have attendwant to have attend
meetings?meetings?
 patients and ca...
 WHERE do you meet?WHERE do you meet?
 Over 60% of PHOver 60% of PH
Support Groups meet atSupport Groups meet at
hospita...
 WHEN does your groupWHEN does your group
meeting?meeting?
 Saturday afternoonSaturday afternoon
(lunch) is the most(lun...
 HOW do you put the firstHOW do you put the first
meeting together?meeting together?
 How do you findHow do you find
pat...
We will mail outWe will mail out
save-the-datesave-the-date
postcards withpostcards with
your meetingyour meeting
informat...
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...
 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 ...
PHA has answers and ideas inPHA has answers and ideas in
our Support Group Leaderour Support Group Leader
ManualManual
Get...
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Starting a Support Group for Rare Diseases, Pulmonary Hypertension Association

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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.

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Starting a Support Group for Rare Diseases, Pulmonary Hypertension Association

  1. 1. {{ StartingStarting aa SupportSupport GroupGroup
  2. 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. 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. 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. 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. 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. 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. 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. 9. We also have comprehensive educational materials to help you start your group…
  10. 10. So back to theSo back to the originaloriginal questions….questions….
  11. 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. 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. 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. 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. 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. 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. 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. 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. 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

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