Soaring Voices - A RESOURCE LIST for Creating your Video!

[Linda Burke]

 

 

     SOARING VOICES promotes awareness of rare diseases and disorders through an innovative global outreach campaign to create unique, uplifting videos or slideshows about rare disease issues with a upload by NORD and Eurordis to YouTube for international Rare Disease Day, February 29th.  The SOARING VOICES of rare disease patients and groups promotes awareness of their issues, while serving to highlight the new international network of patient-centered, disease-specific communities at www.rarediseasecommunities.org that bring information and support to rare disease patients and their families. 

 

Create an innovative, uplifting slideshow or video for the SOARING VOICES campaign! 

Resource links list BELOW....

 

We welcome patients, hospitals, researchers, rare disease families, service or social organizations, non-profits, medical staff, medical interests, companies providing support or services to those in a variety of rare disease fields, and others.  If you currently cannot find a disease-specific support group, create a slideshow or video outlining your disorder and ask the world's patient population to meet you at www.rarediseasecommunities.org to begin a new patient community - this is a great outreach tool to gather global participants with interests in your disorder!

 

POSTING Your Project:  Please upload your SOARING VOICES video or slideshow to both the international Rare Disease Day site at http://video.rarediseaseday.org/yourstory/video, where NORD/Eurordis staff will post your SOARING VOICES project for you - please remember to also post your slideshow or video to our aHUS YouTube Channel.  Directions to post on our dedicated aHUS Soaring Voices channel at http://www.youtube.com/user/aHUSrarediseaseday can be found at http://alphamarketing.com/ahus/rarediseaseblog/rddblog_012512.pdf  (Step by Step Directions, in gray portion at end). 

 

 

 SOARING VOICES 

  Resource List

 

 

Overview of Soaring Voices:

 

*  Watch the Tricky Britches, SOARING VOICES Video:   http://youtu.be/4Qdki0DroX0  (Lyrics: http://alphamarketing.com/ahus/rarediseaseblog/english.html)

 

*  Soaring Voices Blog, with detailed links/embeds:  http://alphamarketing.com/ahus/rarediseaseblog/rddblog_012512.pdf

 

*  Create an original, uplifting Soaring Voices slideshow or video and send it to the International Rare Disease Day site at:   http://video.rarediseaseday.org/yourstory/video  (Please end your project's title with SOARING VOICES) NORD/Eordis staff will post your project for you.

Please also post your entry to our dedicated Soaring Voices channel at http://www.youtube.com/user/aHUSrarediseaseday .  Step by step directions for posting can be found at http://alphamarketing.com/ahus/rarediseaseblog/rddblog_012512.pdf  (Last page, in gray portion at end). 

 

 

Music:

 

*  "A Rare One" by Tricky Britches- (created especially for Soaring Voices) download at CD baby: http://www.cdbaby.com/cd/trickybritches12  with an instrumental version at http://www.cdbaby.com/cd/trickybritches13

 

*  Tricky Britches generously is donating 20% of profits from their CD Baby music downloads of "A Rare One" to 5 non-profits that serve rare disease patients, see: http://alphamarketing.com/ahus/rarediseaseblog/organizations.html  

 

*  "A Rare One" Lyrics in English, Spanish, French:

http://alphamarketing.com/ahus/rarediseaseblog/english.html

http://alphamarketing.com/ahus/rarediseaseblog/spanish.html

http://alphamarketing.com/ahus/rarediseaseblog/french.html

 

 

Graphics to download:

 

*  aHUS poster: http://alphamarketing.com/ahus/SoaringVoices_Poster.pdf

 

*  RDD graphics for websites, FB pages, more:  http://www.rarediseaseday.org:80/article/download

 

 

Other ways to Get Involved:

 

*  Add a Countdown Clock, FaceBook Badge, or website banner for international Rare Disease Day with  graphics  http://www.rarediseaseday.org:80/article/download .

SHARE via email or FaceBook - Encourage friends, rare disease families or organizations, schools, businesses, medical personnel, researchers, hospitals, and colleagues to get involved!

 

*  Invite others to help you create an innovative, uplifting slideshow or video for the SOARING VOICES campaign!  We welcome patients, hospitals, researchers, rare disease families, service or social organizations, non-profits, medical staff, medical interests, companies providing support or services to those in a variety of rare disease fields, and others.  If you currently cannot find a disease-specific support group, create a slideshow or video outlining your disorder and ask the world's patient population to meet you at www.rarediseasecommunities.org to begin a new patient community - this is a great outreach tool to gather global participants with interests in your disorder!

 

*  Encourage others to participate in see the Soaring Voices Campaign.  Spread the Outreach Message below.  ALL are welcome to participate with increasing rare disease awareness!  Note the 2 messages below you can share awareness for rare diseases via friends, associates, and organizations via email, FaceBook, or Twitter.

 

*  Based in California, The R.A.R.E. Project creates innovative support and outreach initiatives through its network:  The Children's Rare Disease Network, and Global Genes, and Rare Connect. The R.A.R.E. Project promotes  Rare disease - Advocacy- Research -Education and Mainers can connect with other Americans sharing their diagnosis at   http://rareproject.org/  This organization has many strengths centered around empowering  patients and their families to become involved with rare disease advocacy, outreach, and awarness efforts. 

Get informed, Get Involved…..Visit  http://rareproject.org/ and Get Connected !

 

                                     Become a Friend of Rare Disease Day 2012 - Soaring Voices is in proud partnership with both sites!

NORD :http://rarediseaseday.us:80/take-action-now/become-a-partner/     (NORD:  http://www.rarediseases.org )

Eurordis: http://www.rarediseaseday.org:80/friends_of_rare_disease_day/becomefriend  (Eurordis: http://www.eurordis.org )

 

-----------------------------------------Short Message to SHARE via FaceBook or Twitter --------------------------------

 

SOARING VOICES, a rare disease outreach project sponsored by the aHUS community, invites you to be inspired, creative, joyful !  Watch Tricky Britches perform "A Rare One" http://youtu.be/4Qdki0DroX0, then create your own Rare Disease Day video or slideshow to upload to YouTube.  Details at http://alphamarketing.com/ahus/rarediseaseblog/rddblog_012512.pdf .

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-------------------------------------------Outreach Message to SHARE  -----------------------------------------

SOARING VOICES is a global Rare Disease Day campaign sponsored by The Foundation for Children with Atypical HUS as an outreach effort for international Rare Disease Day (Feb. 29^th, 2012) .  Be joyful, be creative, be inspired -Watch Tricky Britches perform "A Rare One" in our Soaring Voices video http://youtu.be/4Qdki0DroX0   and join us .  In partnership with The R.A.R.E. Project, NORD, and Eurordis to raise awareness for the 1 in 10 Americans (300 people million worldwide) diagnosed with a rare disease or disorder, Soaring Voices is an innovative campaign to promote awareness,  provide information, and give support those who are “A Rare One”.

Contact Info:            Linda Burke                E:  [e-mail]                                          

"A Rare One" by Maine bluegrass band Tricky Britches provides an uplifting message with their lyrics: http://alphamarketing.com/ahus/rarediseaseblog/english.html .  FMI see detailed info, links, and embed resources at http://alphamarketing.com/ahus/rarediseaseblog/rddblog_012512.pdf .

 

Please share this email, promoting Rare Disease Awareness and garner support for international Rare Disease Day, February 29th, 2012.

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