2016 planning webinar - global genes...monday, february 29, 2016 rare disease documentary screening...
TRANSCRIPT
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2016 Planning Webinar
Tuesday, December 15, 2015
How to Ask Questions
Please submit your questions through the Q&A feature on the bottom of your
screen.
Questions will be answered at the end of the webinar during the Question &
Answer Session.
If you have any technical difficulties, please direct your questions and concerns to Amanda Knitter at [email protected].
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Webinar Topics
About Global Genes
What’s World Rare Disease Day
How to Get Involved
Ideas for Local Events
What's Happening Across the Country?
How to Tell and Share YOUR Story
What's New? RAREHouse
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Presenters
Carrie OstreaManager, Patient Advocacy
2016 WRDD Planning Webinar
Jaymie RodemsManager, Marketing & Communications
Kym KilbourneVice President, Patient Advocacy
Amy GroverDirector, Operations
2016 WRDD Planning Webinar
Kym KilbourneVice President, Patient Advocacy
Who is Global Genes?
To Eliminate the Challenges of Rare Disease.
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Who Is Global Genes?
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RARE Disease Facts
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RARE Disease Facts
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Carrie OstreaManager, Patient Advocacy
Parent Advocate
2016 WRDD Planning Webinar
About World Rare Disease Day
Monday, February 29th, 2016
• Each year World Rare Disease Day is held on the last day in February.
• 2016 is LEAP YEAR so World Rare Disease Day will be the rarest day of the year.
About World Rare Disease Day
Background:• First launched by EURODIS and its partners in
February 2008*• Over 84 countries participated in events in
2015*
Raise general public, media, industry, and legislative awareness for:• Rare diseases • Improved access to treatments and therapies• Improved physician understanding of rare
conditions• Public support for the millions of people
fighting rare diseases
* Facts provided by rarediseaseday.org
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How To Get Involved
Jeans, Genes, and Hope!
Global Genes promotes its mission with a unifying symbol of hope – the Blue Genes Denim Ribbon™
2015: Over 200,000 ribbons distributed for 1,100+ events!
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Types of Rare Disease Day Events
1. Educational institution
2. Community
3. Business
4. Legislative (local – state – federal)
Event Locations
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Event Purpose
Raising Awareness for:
Patient Centered
Specific Disease Centered
Rare Disease Overall
Fundraising
• Who does the money go to?
• Rare disease specific organization
• Support organization (non-rare disease specific)
• Patient’s family
• Global Genes
• If supporters wish to make a tax-deductible donation, receiving organization must be 501(c)(3)– use Guidestar or Charity Navigator to verify
• How will the money be collected?
Event Goal
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https://globalgenes.org/toolkits/
Event Ideas - Educational Locations
World Rare Disease Day Program• Age-appropriate understanding of genetics and rare diseases• Encourage rare families to share their story• All staff and students to wear jeans and the Denim Ribbon• Possible fundraiser: Each staff member donates $5 to wear jeans
that day
Denim Designs Art Activity• Encourage creative ways they can make their pair of jeans look
unique or rare• Hang completed pictures in the office or around the school• Winners for different grade levels or group winners K-3, 4-6, etc.
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Event Ideas - Groups
Denim Scavenger Hunt• Work with student organizations (clubs, Greek, etc.) to
create a fun and informative events for college kids. • Students must wear jeans. They race around a
designated area in search of denim ribbons hidden and try to collect the most within a given time frame.
• The group or individual that collects the most wins a denim trophy/award.
Wear That You Care – and Share!• Reach out to your co-workers, medical care team, or building
management and invite them to participate by wearing jeans and ribbons.
• Distribute flyers, informational letters, and/or genes™ ribbons to help spread awareness
• Request a group photo of their colleagues wearing jeans and ribbons.
• Share their event and photos and encourage others to join in.• Possible fundraiser: $5 to wear jeans at work
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Jeans and Colored-Shirt Photos• Encourage everyone to wear jeans and a specific color
or company shirt with genes™ ribbon
Care about Rare Party• Provide information on rare disease (specific story
works best to start conversation), include blue drinks and desserts (like cupcakes, cake, and candy)!
Lunch and Learn• Invite rare families to share experiences during
lunchtime office event.
Rare Jeans• Decorate, paint, bedazzle jeans • Make them unique and rare• Can partner with schools, local clubs, sports teams,
and other organizations • Wear on Rare Disease Day
More Event Ideas
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Partner with Retail Store to Share Ribbons and Awareness
• Collaborate with a local store, restaurant, or office to promote February 29th as Rare Disease Day
Grand Rounds at Local Hospital
• Rare patient advocates educating medical specialists about rare disease – sharing their story, rare disease facts, and the importance of diagnosis
State Events
• Host an event at your state capital
• Events in the works for Utah (UtahRARE.org), California, Connecticut and 12 other states – need all 50 represented!
More Event Ideas
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More Event Ideas
Little Miss Hannah’s Jeans for Genes DayoEvery year since 2011 at 3 Las Vegas area Elementary Schools
oLast hour of school dedicated to WRDD activity
–30 minutes of age appropriate education on genetics, disabilities, and compassion
–30 minutes for each child to design a card of “hope” to be given to a local rare family
More Event Ideas
Rare Disease Day atLas Vegas Show 2015
Kops 4 Kids on Rare Disease Day 2013
Share Your Event
Submit your event to Global Genes!
Global Genes will regularly update the list of events promoted on our website:
• Public events: Location info, organizer’s contact info and/or website to encourage greater attendance
• Private events: Will not include attendance information
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Rare Disease Week in Washington D.C.Sponsored by the National Center for Advancing Translational Sciences and the National Institutes of Health Clinical Center
The program runs 8:30 a.m. to 3:30 p.m. on NIH's main campus in Bethesda, MD.It is free and open to the public.
Visit: https://events-support.com/events/NIH_Rare_Disease_Day/
Monday, February 29, 2016Rare Disease Day at the
National Institutes of Health
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Rare Disease Week in Washington D.C.
Rare Disease Week in Washington D.C.
For information, please go to www.rareadvocates.org
February 29 to March 3, 2016Events hosted by RDLA, a program of the EveryLife Foundation for Rare Diseases
Monday, February 29, 2016 Rare Disease Documentary Screening &Cocktail Reception at U.S. Navy Memorial
Tuesday, March 1, 2016 Legislative Conference at FHI 360
Wednesday, March 2, 2016 Lobby Day Breakfast at the Capitol Hill Cluband Capitol Hill Meetings
Thursday, March 3, 2016Congressional Caucus Briefing at the Capitol Visitor Center & Rare Artist Reception in the Rayburn House Office Building
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Rare Disease Week in Washington D.C.
For information, please go to www.rareadvocates.org
Key Dates
Event Registration• Registration is required for RDLA events – they are free and open to the public.
Registration opens in January.• The goal is to have advocates in all 50 states and Puerto Rico attend.
Travel Stipends• RDLA has a limited number of travel stipends available for advocates. Visit the
website to apply by December 31, 2015. Advocates will be notified in early January. Go here: everylifefoundation.org/travel-scholarship-application/
Patient Stories• If you are unable to join the activities on Capitol Hill, you can submit your
unique patient story by February 15. Your story will be hand-delivered to your Member of Congress. Go here: rareadvocates.org/rdw/patientstories/
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Rare Disease Week – Across the U.S.
Kansas City
RareKC Collaboration; University of Kansas, Children’s Mercy, Genetics Center, Stowers Institute, Turner Syndrome Global Alliance, CF Foundation are coming together to build a comprehensive rare disease support effort and will be hosting a symposium at the Kaufmann Foundation Monday Feb 29. Global Genes will be participating as KC turns Denim Blue in support of rare disease.
Sanford Burnham in La Jolla
CORDS in South Dakota
University of Southern California – Keck School of Medicine
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2016 WRDD Planning Webinar
Jaymie RodemsManager,
Marketing & Communications
Tell Your Story
Make It Great
http://kids.nationalgeographic.com/explore/science/the-truth-about-your-heart/#heart.jpg
1. Less is more*Top 5 important parts
2. Get to the heart of the story
3. Connect with people
4. Grab attention
Put It In Context
The bigger picture makes your story RELATABLE to the
audience.
Numbers help make your story CREDIBLE.
Context makes your story IMPACTFUL.
Use Hashtags
http://www.mustansariqbal.com/social-media-marketing/how-to-use-hashtags-to-your-benefit/
#WRDD2016 #CareAboutRare
Create a Cover
Download at:http://globalgenes.org/WRDD
Twitter and Facebook Cover
Profile pictures for all social media, including Facebook, Twitter, and Instagram
Create an Event
Create an Event
Pitch It
Pitch It
• Remember to make it a great story:• Less is more
• *Top 5 important parts• Get to the heart of the story• Connect with people • Grab attention
• Frame yourself as the local expert.
• Share statistics that resonate with the general public.
Use Resources
You Can Do It!
1. Telling your story is important.
2. Use social media will amplify your message.
3. Hashtags are your friend.
4. Local news outlets want to hear from you
5. Global Genes has resources to support you.
2016 WRDD Planning Webinar
Amy GroverDirector, Operations
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Questions & Answers
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How to Ask Questions
Please submit your questions through the Q&A feature on the bottom of your
screen.
Questions will be answered at the end of the webinar during the Question &
Answer Session.
If you have any technical difficulties, please direct your questions and concerns to Amanda Knitter at [email protected].
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