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navigation #mw-navigation
search #p-search
defining our terms /index.php/defining_our_terms
the power of advocacy organizations /index.php/the_power_of_advocacy_organizations
why go there? /index.php/why_go_there%3f
how to use this guide /index.php/how_to_use_this_guide
history of advocacy organizations and genetic alliance /index.php/history_of_advocacy_organizations_and_genetic_alliance
the kitchen table is a good place to start /index.php/the_kitchen_table_is_a_good_place_to_start:_klinefelter_syndrome_and_associates
genetic alliance /index.php/genetic_alliance
determine goals /index.php/determine_goals
characterize condition /index.php/characterize_condition
characterize resources /index.php/characterize_resources
compare goals and resources, with the characteristics of the condition /index.php/compare_goals_and_resources,_with_the_characteristics_of_the_condition
considering starting a support group for a condition that already has one? /index.php/considering_starting_a_support_group_for_a_condition_that_already_has_one%3f
challenges of 'splinter groups' /index.php/challenges_of_%27splinter_groups%27
organization development /index.php/developing_the_organization_that_can_achieve_your_goals
advisory boards /index.php/advisory_boards
bylaws and articles /index.php/bylaws_and_articles
governance board /index.php/developing_a_governance_board
ensuring cultural competence /index.php/ensuring_cultural_competence
finding a lawyer /index.php/finding_a_lawyer
insurance and policies /index.php/insurance_and_policies
international offices /index.php/international_offices
nac best practices /index.php/nac_best_practices
organization's name /index.php/your_organization%27s_name_is_important
staff /index.php/staff
tax and finance /index.php/tax_and_finance
volunteers /index.php/volunteers
working remotely /index.php/working_remotely
working with a lawyer /index.php/working_with_a_lawyer
organization development /index.php/developing_the_organization_that_can_achieve_your_goals
becoming the organization you imagine /index.php/becoming_the_organization_you_imagine
building a website /index.php/building_a_website
charity rating listings /index.php/charity_rating_listings
conference call services /index.php/conference_call_services
donations /index.php/donations
events /index.php/events
financial assets /index.php/financial_assets
getting grants /index.php/getting_grants
harnessing the resources that are hard to measure /index.php/harnessing_the_resources_that_are_hard_to_measure
helping your membership help your group /index.php/helping_your_membership_help_your_group
how to obtain donated office space /index.php/how_to_obtain_donated_office_space
internet service provider /index.php/choosing_an_internet_service_provider
maintaining computer files /index.php/maintaining_computer_files
maintaining membership /index.php/maintaining_your_membership
meet your neighbors & organizations /index.php/meet_your_neighbors_%26_organizations
member dues /index.php/member_dues
novel meeting formats /index.php/novel_meeting_formats
people and roles /index.php/people_and_roles
recruiting /index.php/recruiting
taking credit cards on the web /index.php/taking_credit_cards_on_the_web
donations from canada/outside the us /index.php/donations_from_canada/outside_the_us
functions of advocacy organization /index.php/functions_of_advocacy_organization
autopsies and tissue collection /index.php/autopsies_and_tissue_collection
best practices /index.php/best_practices
conferences, workshops, and meetings for affected individuals /index.php/conferences,_workshops,_and_meetings_for_affected_individuals
connecting individuals /index.php/connecting_individuals
connecting organizations /index.php/connecting_organizations
dealing with death /index.php/dealing_with_death
internet services /index.php/internet_services
phone services /index.php/phone_services:_going_beyond_the_phone_tree
protecting member privacy /index.php/protecting_member_privacy
regional support groups /index.php/informal_offices_or_regional_support_groups
resources for school success /index.php/resources_for_school_success
setting up a national conference /index.php/setting_up_a_national_conference
social networking /index.php/social_networking
support for individuals and families /index.php/support_for_individuals_and_families
youth to adult transition issues /index.php/youth_to_adult_transition_issues
functions of advocacy organization /index.php/functions_of_advocacy_organization
articles, letters, and other media for lay publication /index.php/articles,_letters,_and_other_media_for_lay_publication
brochures and fact sheets /index.php/brochures_and_fact_sheets
clinician- and researcher-focused materials /index.php/clinician-_and_researcher-focused_materials
family health history /index.php/family_health_history
medical records /index.php/medical_records
newsletters and bulletins /index.php/newsletters_and_bulletins
press kits /index.php/press_kits
publicity and general media /index.php/publicity_and_general_media
publisher recommendations /index.php/publisher_recommendations
starting points for planning materials /index.php/starting_points_for_planning_materials
webinars /index.php/webinars
functions of advocacy organization /index.php/functions_of_advocacy_organization
barriers to rare disease research /index.php/barriers_to_rare_disease_research
benefits of collaboration with advocacy organization community /index.php/benefits_of_collaboration_with_advocacy_organization_community
blood and tissue banks /index.php/blood_and_tissue_banks
consumers and researchers /index.php/consumers_and_researchers:_making_it_work
creating a natural history survey /index.php/creating_a_natural_history_survey
educating membership about research /index.php/educating_membership_about_research
facilitating quality research /index.php/facilitating_quality_research
funding research by others /index.php/funding_research_by_others
getting needs onto the research agenda /index.php/getting_needs_onto_the_research_agenda
genetic privacy /index.php/genetic_privacy
orphan drug application /index.php/orphan_drug_application
patient's bill of rights /index.php/patient%27s_bill_of_rights
planning a research conference /index.php/planning_a_research_conference
promoting research /index.php/promoting_research
registries /index.php/registries
registry and biobank weekly tips /index.php/registry_and_biobank_weekly_tips
research models /index.php/research_models
translational science /index.php/translational_science
functions of advocacy organization /index.php/functions_of_advocacy_organization
councils and other advisory bodies /index.php/councils_and_other_advisory_bodies
getting an icd-9 code added for your condition /index.php/getting_an_icd-9_code_added_for_your_condition
getting needs on government and legislative agendas /index.php/getting_needs_on_government_and_legislative_agendas
legislation and policy advocacy /index.php/legislation_and_policy_advocacy
national institutes of health (nih) /index.php/national_institutes_of_health_(nih)
policy tools & resources /index.php/policy_tools_%26_resources
advocacy organizations list /index.php/advocacy_organizations_list
advocacy resources /index.php/advocacy_resources
assistive technology /index.php/assistive_technology
biobanks /index.php/biobanks
blogging /index.php/blogging
children's hopes and dreams foundations /index.php/children%27s_hopes_and_dreams_foundations
consumer medical information /index.php/consumer_medical_information
emergency preparedness /index.php/emergency_preparedness
fundraising /index.php/fundraising
fundraising appeals /index.php/fundraising_appeals
fundraising/third party /index.php/fundraising/third_party
joint fundraising /index.php/joint_fundraising
general resources /index.php/general_resources
information about rare genetic diseases /index.php/information_about_rare_genetic_diseases
matching resources /index.php/matching_resources
meet your neighbors & organizations /index.php/meet_your_neighbors_%26_organizations
publications /index.php/publications
resources for nonprofits /index.php/resources_for_nonprofits
sibling support /index.php/sibling_support
state registration /index.php/state_registration
travel /index.php/travel
individual speaker recommendations /index.php/individual_speaker_recommendations
log in /index.php?title=special:userlogin&returnto=main+page
page /index.php/main_page
discussion /index.php?title=talk:main_page&action=edit&redlink=1
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read /index.php/main_page
view source /index.php?title=main_page&action=edit
view history /index.php?title=main_page&action=history
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/index.php/main_page
main page /index.php/main_page
recent changes /index.php/special:recentchanges
random page /index.php/special:random
what links here /index.php/special:whatlinkshere/main_page
related changes /index.php/special:recentchangeslinked/main_page
special pages /index.php/special:specialpages
printable version /index.php?title=main_page&printable=yes
permanent link /index.php?title=main_page&oldid=996
page information /index.php?title=main_page&action=info
privacy policy /index.php/wikiadvocacy:privacy_policy
about wikiadvocacy /index.php/wikiadvocacy:about
disclaimers /index.php/wikiadvocacy:general_disclaimer
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genomics forum directory http://genomicsforum.org/?page=mdirectory
http://wikiadvocacy.org/index.php?title=main_page&oldid=996 http://wikiadvocacy.org/index.php?title=main_page&oldid=996

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main page from wikiadvocacy jump to: navigation, search request an account this is a community page and we encourage contribution from all, but due to excessive spamming, wikiadvocacy requires confirmation that you are in fact a real person. if you created an account before march 1, 2014, you will need to create a new log in. please send all account requests with your name and phone number to: info@geneticalliance.org introduction defining our terms the power of advocacy organizations why go there? how to use this guide history of advocacy organizations and genetic alliance the kitchen table is a good place to start genetic alliance organizational assessment determine goals characterize condition characterize resources compare goals and resources, with the characteristics of the condition considering starting a support group for a condition that already has one? challenges of 'splinter groups' organization development: organizational structure advisory boards bylaws and articles governance board ensuring cultural competence finding a lawyer insurance and policies international offices nac best practices organization's name staff tax and finance volunteers working remotely working with a lawyer organization development: resources for development becoming the organization you imagine building a website charity rating listings conference call services donations events financial assets getting grants harnessing the resources that are hard to measure helping your membership help your group how to obtain donated office space internet service provider maintaining computer files maintaining membership meet your neighbors & organizations member dues novel meeting formats people and roles recruiting taking credit cards on the web donations from canada/outside the us functions of advocacy organization: support autopsies and tissue collection best practices conferences, workshops, and meetings for affected individuals connecting individuals connecting organizations dealing with death internet services phone services protecting member privacy regional support groups resources for school success setting up a national conference social networking support for individuals and families youth to adult transition issues functions of advocacy organization: education articles, letters, and other media for lay publication brochures and fact sheets clinician- and researcher-focused materials family health history medical records newsletters and bulletins press kits publicity and general media publisher recommendations starting points for planning materials webinars functions of advocacy organization: research barriers to rare disease research benefits of collaboration with advocacy organization community blood and tissue banks consumers and researchers creating a natural history survey educating membership about research facilitating quality research funding research by others getting needs onto the research agenda genetic privacy orphan drug application patient's bill of rights planning a research conference promoting research registries registry and biobank weekly tips research models translational science functions of advocacy organization: advocacy councils and other advisory bodies getting an icd-9 code added for your condition getting needs on government and legislative agendas legislation and policy advocacy national institutes of health (nih) policy tools & resources resources advocacy organizations list advocacy resources assistive technology biobanks blogging children's hopes and dreams foundations consumer medical information emergency preparedness fundraising fundraising appeals fundraising/third party joint fundraising general resources information about rare genetic diseases matching resources meet your neighbors & organizations publications resources for nonprofits sibling support state registration travel speakers bureau genomics forum directory individual speaker recommendations retrieved from "http://wikiadvocacy.org/index.php?title=main_page&oldid=996" navigation menu personal tools log in namespaces page discussion variants views read view source view history actions search navigation main page recent changes random page tools what links here related changes special pages printable version permanent link page information this page was last modified on 15 april 2016, at 19:51. this page has been accessed 431,398 times. privacy policy about wikiadvocacy disclaimers


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