1. {{ StartingStarting aa 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 goalsbut they had lofty goals The Pulmonary Hypertension AssociationThe 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 MissionOur 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so information medicalinformation medical professionals orprofessionals or websites provide canwebsites provide can be outdated,be outdated, inaccurate andinaccurate and frightening!frightening! 6.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, thats a giventhats 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. Well set up a group website for your group and youllWell set up a group website for your group and youll find patients from PHAs high web trafficfind patients from PHAs high web traffic 18. We can give you ideas of whatsWe can give you ideas of whats common and whats proven to workcommon and whats 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