World Rare Disease Day 2014
Planning Webinar:
Ideas and Suggestions to Host Your
Own World Rare Disease Day Event
December 11, 2013 – 11:00 am PT
Moderated by:
Carrie Ostrea, Advocacy Director
Global Genes | RARE Project
www.globalgenes.org
Our Mission
Global Genes | RARE Project is a leading global rare and
genetic disease patient advocacy organization.
We work to build and unify the global rare and genetic disease
community and positively impact patients in their lifetime by offering
programs designed to educate, empower, and support patients, advocates,
foundations, and other rare disease focused organizations.
Our RARE Webinar Series is
Answering Questions
Through the Question and Answer (Q&A) feature,
please direct your questions regarding today’s topic
to this webinar’s Moderator, Carrie Ostrea.
Questions will be answered after the presentations
from our panelists.
If you have any technical difficulties, please direct
your questions and concerns to this webinar’s Host,
Katie Mastro, through Chat, Q&A, or email:
[email protected]
Importance of Rare Disease Awareness
About World Rare Disease Day
Background:
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First launched by EURODIS and its partners in February 2008*
Over 70 countries participated in events in 2013*
Why February 28th this year?
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Rare Disease Day is held on the last day of February
Celebrated February 29th, the rarest day of the year
Raise general public, media, industry, and legislative
awareness for:
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Rare and genetic diseases
Improved access to treatments and therapies
Improved physician understanding of rare and genetic conditions
Public support for the millions of people fighting rare diseases
* Facts provided by rarediseaseday.org
Jeans, Genes, and Hope– A Natural Fit!
Blue Denim Genes Ribbon™:
Global Genes promotes its mission with a unifying symbol of hope.
Considered the universal symbol for rare and genetic
disease awareness, this ribbon helps unify a fractured
community of thousands of small diseases that lack a
collective voice.
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2012: 45,000 ribbons were distributed
2013: 100,000 ribbons were distributed
2014: 150,000+ ribbons anticipated
“100 denim ribbons for my
sister’s rare disease…HOPE”
Jeans, Genes, and Hope!
Wear That You Care™
Global Genes will promote two #hashtags leading up to World Rare
Disease Day 2014 to raise awareness for rare and genetic diseases:
#CareAboutRare
#WRDD2014
We encourage partners, advocates, and supporters to include these
#hashtags in press releases and other materials to employees or their
constituents to use on World Rare Disease Day 2014.
Download graphics from GlobalGenes.org.
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Instagram and Twitter: #CareAboutRare, #WRDD2014,
@GlobalGenes
Facebook profile pictures and photo sharing
Types of Rare Disease Day Events
Event Types:
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Educational institution (school, university, etc.)
Community (public, family, club, etc.)
Business (small and medium sized)
Corporate (large businesses)
Legislative (federal, state, and local awareness
initiatives)
Event Considerations
Awareness
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Patient specific
Specific disease
General rare disease community
Fundraising
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Who does the money go to?
• Rare disease specific organization
• Support organization (non rare disease specific)
• Patient’s family
• Global Genes | RARE Project
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?
Other Considerations:
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Permit or other type of authorization needed to host event
Publicity: how to spread the word about your event
Education/Business Event Ideas
Julie Cunningham
Event Ideas: Educational Institutions
Little Miss Hannah’s “Jeans for Genes Day”
Three local Las Vegas elementary schools dedicate one hour of school
for rare disease awareness activities, annually since 2011.
Awareness:
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30 minutes of age-appropriate genetics education
30 minutes for students to create “cards of hope”
Share a personal story of a local child with a rare disease
But focus on all rare diseases affecting children and the
acceptance of disabilities
Encourage participants to wear jeans and “Genes™ ribbons”
Parent letter is sent home with each student explaining the day
Fundraising:
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Can be a fundraising event (by asking staff and/or children to pay
$1 to $5 to wear jeans that day)
Denim Designs
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Distribute Jenes, Genes, and Hope coloring page for students to
color/decorate at home
(download at http://globalgenes.org/?wpfb_dl=104)
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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.
Work with PTA to provide a pizza party or other incentive for
classes that have the most participation
Announce winners on Rare Disease Day
All participants will receive some type of collateral (Genes™
ribbons, stickers, bracelets, etc.)
Possible fundraising ideas:
• Let kids vote for favorites using coin jars
Denim Dash – University
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Work with student organizations (clubs, Greek, etc.) to create a fun and
informative events for college kids.
Begin with a 5-10 minute lecture about rare diseases and/or have flyers &
information available at booths around event.
To organize a “Denim Dash”:
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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.
Conclude activity with a celebration, music, food, etc.
Encourage athletic department to participate, as this would encourage more
student participation if they were racing against school athletes.
Wear That You Care… and Share!
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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:
• Ask employees to pay $5 to wear jeans on Friday, February
28, or $20 to wear jeans all week.
You can Raise a-RARE-ness
Don’t have the time or ability to create an event for 2014? No worries!
• Simply reach out to those you know and ask the to support WRDD
by wearing jeans and ribbons.
• Drop of informational note/flyer explaining Rare Disease Day and
the Jeans, Genes, and Hope campaign.
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Solicit support from local businesses, service vendors, or places where
you and your family go.
Reach out to playgroups, church groups, book clubs, kids sports teams,
gyms, libraries, dentist offices, hair salon, dry cleaner, nail place, any
place in your community.
Reach out to people in your neighborhood, on your Christmas card list
or friends on social media inviting them to participate in Rare Disease
Day.
Important: Be sure to get your ribbon orders in early to ensure delivery
before Rare Disease Day!
Other Business Ideas
• 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.
Human DNA chain!
Community Event Ideas
Cassie Johnston
Alstrom Angels
Instagram’s February “Rare Photo-a-day Challenge”
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Raise Awareness
Submit to various contests
Use Hashtags:
#CareAboutRare
#WRDD2014
Photos from www.facebook.com/GlobalGenesProject
Care About Rare Party
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Offer blue drinks, food, ribbons, etc.
Hold at a private venue or a local restaurant.
Can be a fundraiser (by charging an entry fee, having restaurant donate
% of proceeds, etc.)
Photos from www.GlobalGenes.org
“Rare Genes/Jeans”
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Decorate, paint, bedazzle jeans
Make them unique and rare
Can partner with schools, local clubs, sports teams,
and other organizations
Decorate before Rare Disease Day
Wear on Rare Disease Day!
Can be a fundraiser
Photo from www.GlobalGenes.org
Rare Disease Forum
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1-2 medical speakers
Possible break-out for rare patients and/or parents
Can be held at local medical office or other gathering area
Can be a fundraiser (by charging a registration fee)
Photos from www.facebook.com/GlobalGenesProject
Family-Friendly Event (Carnival)
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Food, music, games, jeans, and ribbons.
Can be a fundraiser (by charging admission, selling food, selling event and
awareness t-shirts, etc.)
Photos from www.GlobalGenes.org
“Care about Rare” Video
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Encourage rare family, friends, medical staff to say:
“I care about rare”
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Wear blue jeans and Genes ribbon
Compile into 1 promotional video with messages
Distribute to local media and through social media
Photos from www.GlobalGenes.org
Jeans, Genes, and Hope Day Race
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Participants run in jeans
Can be an obstacle course race
Can be a fundraiser (by charging a registration fee, participants getting pledges for
the number of times they complete the course, etc.)
Photos from www.GlobalGenes.org
Other Community Ideas
It’s in Our Jeans:
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Partner with a local retailer that sells or specializes in denim
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Have them hand out ribbons on Rare Disease Day
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Could be a fundraiser (if they contribute a portion of the sale of the jeans)
“Baby’s Got Her Blue Jeans On” Natural Beauty Pageant:
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Hosted to help raise awareness for rare diseases
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Participants wear denim-inspired outfits
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Can be a fundraiser (by charging a fee to enter the pageant)
Jeans, Genes, and Hope Fashion Show:
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Local stores sponsor and lend jeans to be worn during the fashion show
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30 minutes will be spent discussing the effect of rare diseases on individuals and families worldwide
Care about Rare Recipe Exchange (like a cookie exchange):
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Make a “rare” dish and bring copies of your rare recipe to share with other guests
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Could be a fundraiser (by taking recipes and putting them into a book to sell to friends and family after the
event)
Denim Consignment/Yard Sale: Hosted to help raise money and awareness for rare diseases
Bracelets of Hope Decorating Party: To be sold as a part of a fundraiser or donated to local rare clinic
Blue Cake with Ribbon Decorating Contest
Legislative Events for Rare Disease Day
Julia Jenkins
Director of Government
& Public Relations
EveryLife Foundation For Rare
Diseases
[email protected]
Legislative Events for Rare Disease Day
Rare Disease Events in DC - 4 Full Days of Events!
Tuesday, February 25th:
• Legislative Conference (8:15 am - 4:30 pm)
• RDLA’s 4th Annual Rare Disease Day Documentary Screening &
Cocktail Reception (5:30 pm – 9:30 pm)
Wednesday, February 26th:
• Lobby Training Breakfast (7:00 am - 8:30 am)
• 9:00 am – 5 pm Capitol Hill Meetings
Thursday, February 27th:
• FDA Regulatory Law & Policy Workshop for Patient Advocates
(8:00 am – 10:30 am)
• Rare Disease Congressional Caucus Briefing (11:30 am – 1:00 pm)
• State Delegation Hill Drop In Meetings
Friday, February 28th:
• RDD@NIH Rare Disease Day at the National Institutes of Health
Legislative Events in Washington D.C.
Lobby Day in Washington D.C.
Only Lobby Day that invites all rare disease organizations & patients to participate
together
• The events are free for patient advocates to attend
• Discounted hotel rates & travel scholarships are provided to help advocates attend
Advocates are becoming more involved!
• 2012: 1st Lobby Day – 70 patient advocates
• 2013: Legislative Conference & Lobby Day – 150 advocates
• 2014: 3 Day Event – Goal of 200 Advocates
Legislative Conference in Washington D.C.
Tuesday, February 25th Legislative Conference
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National Press Club, 529 14th Street NW (Near the White House
& Metro Center)
8:15 am – 9:00 am Registration & Breakfast
9:00 am – 3:30 pm General Session, lunch included
3:30 pm – 4:30 pm Lobby Day Issue Training & Soap Box Meeting
“Schedule Overview”
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General Session Topics:
– State/Regional Organization & Advocacy
• Obama Care Implementation
• Newborn Screening
– Meet the Industry & Patient Orgs who influence legislation
– Insider’s view on the 2014 Midterm Elections
You must attend the Conference to participate in the Lobby Day
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Lobby Day in Washington D.C.
Wednesday, February 26th Lobby Day
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7:00 am - 8:30 am Lobby Training Breakfast
Top of the Hill, Reserve Officers Association
– One Constitution Avenue, NE
Metro stations are conveniently located both 2 blocks south and north of the venue at Capitol
South (Blue and Orange Lines) and Union Station (Red Line) – within walking distance to the
House & Senate meetings
9:00 am – 5:00 pm Capitol Hill Meetings with Members of Congress & Congressional Staff
Legislative Events for Rare Disease Day
Thursday, February 27th State Delegation Hill Meetings
New This Year ***Optional Day
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Advocates who wish to drop by Congressional Offices and attend meetings on behalf of fellow
advocates in their States who are too sick or unable to come to DC
With the help of Global Genes | Rare Project, we will be collecting stories from rare disease
patients across the US to hand deliver to their Member of Congress
Our goals are to:
– Let every Member of Congress know that there are rare disease patients living
in their districts who deserve Congress’ attention
– Give those advocates who cannot make the trip to DC an opportunity to be heard by Congress
Travel Scholarships
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Funding for scholarships is limited and is directed to ensure that a diverse
representation of advocates are able to participate
Only available for those outside of the DC metro area
One per family member / US residents only
Maximum award is $600.00
Must attend both the Legislative Conference & Lobby Day
Scholarship recipients will be announced on January 24th
– Checks will be available to pick up during Legislative Conference Registration
– Recipients will be required to present a valid ID, Social Security Number & sign for
the check
Apply at: http://rareadvocates.org/travel-scholarship-application/
Hotel Information
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Hotel Room Block: Embassy Row Hotel
Dupont Circle, on the Red Metro line, 2015 Massachusetts Ave, NW
$149/night single $169/night double + 14% DC Tax
Book your hotel online or Call (202) 939-4208 & ask for the EveryLife Foundation
Room Block
Complimentary internet in guest rooms; complimentary breakfast
There are a limited number of rooms available at the discounted rate
Discounted rates expire on Monday, February 3rd
Legislative Events in Washington D.C.
RDLA’s 4th Annual Rare Disease Day
Cocktail Reception & Movie Screening
Tuesday, February 25, 2014
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Carnegie Institution of Science
– 1530 P Street Northwest (near Dupont Metro)
Food & drinks will be served from 5:30-7:00 pm
7:00 pm Movie Screening, 8:30 pm Panel Discussion
The event is free & open to the public
We encourage you to wear jeans to support Global Genes
Legislative Events in Washington D.C.
EveryLife Foundation for Rare Diseases
Workshop on FDA Regulatory Law & Policy
Thursday, February 27th
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8:00 am – 10:30 am Breakfast
Embassy of Greece
– 2217 Massachusetts Ave NW, (near Dupont Circle)
Hear from Advocates, Industry, Legal Experts & FDA
Will cover topics such as Expanded Access, Compassionate Use and Emergency IND’s
Registration coming soon
Will be recorded & posted on the web as a resource
Legislative Events in Washington D.C.
Rare Disease Congressional Caucus Briefing
Thursday, February 27th:
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11:30 am – 1:00 pm, Lunch provided
Capitol Visitors Center, Room: HVC – 201
Opportunity for advocates to go inside the Capitol
Goal is to educate Congressional Staff about rare disease legislative issues
& highlight Rare Disease Day awareness
Registration coming soon
Rare Disease Day at the NIH- Washington D.C.
Friday, February 28, 2014:
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7:30 a.m. Registration and Poster/Booth Set Up
8:30 a.m. - 5:00 p.m. Sessions
9000 Rockville Pike Bethesda, MD, a short walk from the Metro Medical
Center station
Organizations have booths & exhibits
The event will also be available via webcast
Attendance is free and open to the public
https://events-support.com/events/NIH_Rare_Disease_Day_2014
Legislative Events for Rare Disease Day
For questions regarding the rare events in DC or
how to get your local legislative representatives
involved, please contact Julia at
[email protected]
Publicity and Media PR
Ilana Jacqueline
Managing Blog Editor
Global Genes | RARE Project
Crafting a Story for Journalists and Reporters
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Recognize that WRDD is a high priority for us, but not
necessarily for them.
Recognize that reporters need more than a date and an
event– they need a story.
Crafting a Story for Journalists and Reporters
Choose a “human element” to go with your story.
What to Mention in Your Pitch to Reporters:
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Names and details about your disease, diagnosis and
treatment
Rare disease’s effect on local/global community
How did you get involved in the rare disease
community?
Is this your first event or fundraiser?
What is your goal?
You May Also Consider:
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Reaching out to your physician or another local physician
who treats rare diseases
You May Also Consider:
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Asking other local families with rare diseases to also share
their stories with the reporter.
Ex. Stories– “A day in the life of rare disease”
Writing a Press Release
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On our website, you’ll find a downloadable “fill-in-theblank” press release
Writing a Press Release
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Remember to add a local element to your release,
whether that’s a local event or a patient that lives in the
community.
Writing a Press Release
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Make sure to spell check your release and have
friends or family look over it for edits.
Contacting Reporters
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The easiest way to contact reporters is by doing a
search for local newspapers and news stations, going
directly to their website and finding the “contact us”
page.
Contacting Reporters & Distributing Your Press Release
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There may be a form
there to submit
press releases—or a
staff page with
contact information
of reporters and
staff.
Contacting Reporters & Distributing Your Press Release
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Still having trouble finding that reporter’s email?
Try contacting them over Facebook or Twitter.
Many reporters now rely heavily on tips from
social media to get their stories.
Contacting Reporters & Distributing Your Press Release
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You can call reporters.
Or send them an email with a short introduction
and your press release copy & pasted into the
body of the email.
This is the preferred method as they won’t have to
open any attachments.
Social Media: Twitter
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Make sure to announce your event/campaign on
Twitter.
You can include the hashtag #WRDD2014 and
#CareAboutRare
You can also include hashtags specific to your disease.
Social Media: Twitter
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Ask friends and followers to retweet you.
Retweet others with the #WRDD2014 and
#CareAboutRare hashtag
Make sure to add links or pictures to your tweets.
Follow and respond to tweets using
search.twitter.com
Social Media: Facebook
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Besides posting your own statuses, you may also want to
post in related groups or pages.
Global Genes Store
Amy Grover
Operations Director
Global Genes | RARE Project
Global Genes Store
Bracelets
Stickers
Decals
Magnets
Key Chains
Pins
Order online at www.globalgenes.org/shop.
For bulk or large orders, email [email protected].
Blue Denim Genes Ribbons ™
Genes Ribbons™ are made available to all partner organizations,
foundations, advocates and other supporters of our global
movement.
http://globalgenes.org/blue-denim-genes-ribbon/
Order Deadline for ribbons for Rare Disease Day
• U.S. mailing address - February 20th
• International mailing address - February 7th
Getting Involved!
Share your event
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Global Genes Website - http://globalgenes.org/world-rare-disease-day-event-submission-form/
Rarediseaseday.org
Related Rare Foundation websites
Local media calendar/events section
Informational posters, flyers, and graphics will be available for download in January 2014
Facebook
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Profile picture change (February 1 to March 31)
Wear That You Care Photos (February 15 to March 31)
Largest virtual Rare Disease Day event: https://www.facebook.com/events/157063967778405/
Twitter / Instagram
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Tag @GlobalGenes on photos, event updates, and stories
Use hashtags: #CareAboutRare and #WRDD2014
Assemble for a creative picture in jeans and the color blue, signs, etc. Post to social media.
Change your organization’s Facebook page profile or cover picture to include the Genes Ribbon™
and campaign
Upcoming Webinar
Upcoming Webinar:
Fundraising Techniques for Rare Organizations
February 19, 2014 – 11:00 am PT
Register today at http://www.globalgenes.org/webinars
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Contact Information
For more information:
Carrie Ostrea
Advocacy Director
[email protected]
Ashley Girtman
Blue Denim Genes Ribbon™ Program
[email protected]
Slides and video from today’s presentation will be made available
on our website at http://www.globalgenes.org/webinars within the next few days.
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Thank you for attending!
World Rare Disease Day 2014
Planning Webinar:
Ideas and Suggestions to Host Your
Own World Rare Disease Day Event
Moderated by:
Carrie Ostrea, Advocacy Director
Global Genes | RARE Project