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Educational Programs

 
 
guest bloggers Online learning to inform and share resources for rare disease advocates and supporters. These 60 to 90 minute sessions bring together multidisciplinary expert panels that educate, inform and offer access to the latest information on a broad range of rare disease topics.   
 
 
guest bloggers Print and online collaborative resources that educate rare disease advocates about issues critical to their journey. Each toolkit includes a resource section, FAQ section, video tutorials and patient advocate/ expert testimonials.  
 
 
 
 
Annual Events


 
 
 

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Each year, Global Genes hosts it’s annual Tribute to Champions of Hope, where we have the good fortune of hearing from rare disease champions from around the globe. These Champions of Hope prove that great things can be accomplished by dreaming, planning, taking action, and believing. The results of which, are quite inspiring. In 2016, the 5th Annual Tribute to Champions of Hope had a total of 650 attendees at the Hyatt Regency in Huntington Beach, California.  
 
 
The goal of the RARE Patient Advocacy Summit is to have patient advocates and other rare disease stakeholders, become inspired, as well as walk away with new information and new connections.  In 2016, the 5th Annual RARE Patient Advocacy Summit had 589 in person attendees and over 1,600 LiveStream participants.
 
 
wrdd-text-only World RARE Disease Day is the last day in February, and is an internationally recognized day of advocacy to call attention to rare conditions both in the United States and around the world.  Global Genes participates in a wide variety of awareness activities leading up to the event and has helped catalyze numerous events around the world.
   

Collaborative Partnership Programs
   
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 The mission of the RARE Corporate Alliance is to actively combine the resources and capabilities of industry leaders and patient communities to improve health and expedite access to effective therapies for all patients with rare diseases. In 2014, membership to the RARE Corporate Alliance increased 30%.
 
 
 
 guest bloggers Patients and families fighting different rare diseases connect in their local communities to share experiences, knowledge, and gain support. In 2014, five aHUS Meetups and one Cystinosis Camp were hosted. Plans for 2015 include at least fifteen aHUS Meetups, one aHUS Pediatric Conference, one Narcolepsy Meetup, and one Cystinosis Camp. 
 
 
 
guest bloggers Brings together rare disease foundations with a shared commitment to advocacy in order to build a stronger collective voice for the rare disease community. In 2014, the RARE Foundation Alliance multiplied from 130 rare disease foundations to 241, which is an increase of 85%. 
 
 
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 Supports the start of the rare disease journey for undiagnosed patients through connections, resources and direct funding for complex diagnostics. In 2014, a pilot program to fund exome sequencing for 30+ patients was launched in partnership with clinical sequencing providers UCLA Clinical Genomics Center and Parabase Genomics.
 
 
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 Assists patients and advocates faced with the challenges of locating resources and tools for reaching a rare disease diagnosis or potential treatments. In 2014, the RARE Concierge program provided information and support to over 500 inquiring members of the rare community.
 
 
 
 

Outreach Programs
 
 
 
 guest bloggers  The Wear That You Care™ campaign is simple — all across the world people can participate in supporting the Global Genes movement and rare and genetic disease awareness by wearing a Genes Ribbon™ and their favorite pair of jeans — also known as vaqueros, cowboybuksers, niuzaiku, farmernadrág and dungarees in other countries.

 
 
Just as the pink ribbon symbolizes breast cancer awareness and the red dress symbolizes heart health, the Blue Denim Genes Ribbon® is a perfect universal sign for rare and genetic disease awareness and helps unify a fractured community of thousands of small diseases who have not had a collective voice.
 
 
 
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Are you a sponsor, partner, or Foundation Alliance member of Global Genes and have important news or events to share? If so, we want to hear from you! 
 
 
 

Info and News
 
 guest bloggers Do you have a rare story of hope and courage to share?  If so, we want to hear from you!
 
 
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RARE Daily has been reimagined to bring more opportunities for rare disease patients to learn and stay informed on important issues with a team of new contributors and subject-matter experts within the rare disease community
 
 
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 Revealing interviews and hard hitting questions with some of the most influential leaders in the rare disease community is what RARECast is all about. Host Daniel Levine of Levine Media Group and creator of The Bio Report (as recognized by Forbes) breaks new ground in this weekly online series.