Leading rare disease patient advocacy organizations Global Genes – Allies in Rare Disease and the EveryLife Foundation for Rare Diseasesare partnering to present RARE on the Road – Rare Disease Leadership Tour. This new leadership series will bring important insights and timely discussion to rare disease patients.  RARE on the Road will help educate and empower the rare disease community’s next generation of advocacy leaders by providing the tools for greater activation and engagement.


“This partnership and the vision for this program is an important example of what should be happening more often in rare disease – partnering for impact, cost efficiencies, and partnering because it is simply the right thing to do,” stated Nicole Boice, CEO of Global Genes. “We are honored to be working with EveryLife Foundation, which most importantly, has the same goals and aspirations as Global Genes- to eliminate the challenges of rare disease.” 


RARE on the Road – Rare Disease Leadership Tour is a collaborative effort with the goal to bring increasing value, insights and knowledge to patients and advocates challenged by rare disease. It is a three-stop road show, with plans to expand each year with additional regional meetings. The tour will kick-off in Atlanta, Georgia on May 13th, then travel to Kansas City, Missouri on June 5th, and conclude in Portland, Oregon on July 15th. This first-of-its-kind collaboration between Global Genes and EveryLife Foundation offers a full agenda of topics and discussions from 8:30 am – 4:30 pm at each location. The program series will provide attendees with the skills and knowledge to affect change for the rare disease community.


“Most patients don’t realize that public policy impacts the development of therapies and cures, access to those treatments, and their​ affordability​. Ensuring rare disease patients have an opportunity to, and are equipped to​, influence these life and death policy decisions is our top priority,” said Julia Jenkins, Executive Director of the EveryLife Foundation for Rare Diseases.


With 1 in 10 Americans affected by one of the 7,000 identified rare diseases, impacting an estimated 100 million patients and caregivers in the U.S., there is a tremendous need for coordinated support, education and outreach.  EveryLife Foundation and Global Genes will be working with patient advocates, subject matter experts and local legislators to better educate and support patients efficiently.


For more information and to register, please visit http://everylifefoundation.org/rare-road-2017/. The events are free and open to the public.

Register at the following links by location:

ATLANTA: http://action.everylifefoundation.org/o/51556/p/salsa/event/common/public/?event_KEY=8836

KANSAS CITY: http://action.everylifefoundation.org/p/salsa/event/common/public/?event_KEY=8866

PORTLAND: http://action.everylifefoundation.org/p/salsa/event/common/public/?event_KEY=8867


RARE on the Road is proudly supported by Vertex Pharmaceuticals Inc. Additional sponsorship opportunities are available.




About Global Genes® – Allies in Rare Disease
Global Genes is a leading global rare disease patient advocacy organization.  The mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections and support to people and resources, and through investment in technologies that will positively impact affected patients and families.  Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide. GlobalGenes.org


About the EveryLife Foundation for Rare Diseases

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy.  We can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases. EveryLifeFoundation.org

12 thoughts on “Global Genes and EveryLife Foundation Announce First-Ever RARE on the Road – Rare Disease Leadership Tour”

  1. I’m no longer certain whgere you are getfting your info,
    bbut great topic. I must spend some time finding out much more or
    working outt more.Thanks for great info I used tto be in search of this info for my
    mission. https://918kiss.care/scr888-hack-tips

  2. sex movies says:

    This design iis wicked! You ceretainly know how to keep a
    reader entertained. Between your witt annd your videos,
    I was almost moved to start my own blog (well, almost…HaHa!) Excellent job.
    I really loved what you had to say, and more than that, how you presented it.
    Too cool! http://www.vegas831.com/en/Download918kiss

  3. adult movie says:

    Attractive section of content. I just stumbled upo your site annd in accession capital to assert that I
    acquire in fact enjoyed account your bblog posts.
    Any way I will bee subscribing tto your augment and even I achievement yyou access
    consisztently quickly. https://www.918kissapk.com/

  4. free cash says:

    Hey! Do you use Twitter? I’d like to follow you if thgat would be okay.
    I’m absolutely enjoying your blog and look forward to new updates. https://918kiss.group/download/

  5. Lead it to as obvious as feasible that this product meets the expectations of your customer.
    Too many nurses seems to be stuck your market treatment
    of disease sequence.

  6. scr888 link says:

    Following thhe files are imported, the file information and
    facts is going being shown in the panel. And currently access to our
    computer without password. These are thee “User Password” aand “Owner Password”.

  7. Greate post. Keep posting such kind of info on your blog.
    Im really impressed by your site.
    Hello there, You have performed an incredible job. I will certainly digg it and for my part suggest to my friends.
    I’m confident they’ll be benefited from this site.

  8. Setting a real kick and money limit too yourself
    will instill discipline and will benefit your funds a much.
    Be all set for a crazy chariot ride through this classic fable.
    If you’renot going to max the machine out, why play? http://www.dpashlaw.com/__media__/js/netsoltrademark.php?d=eldoradohotelvip.com%2F__media__%2Fjs%2Fnetsoltrademark.php%3Fd%3D3win8.city%2Fother-games%2F918kiss-scr888%2F17-918kiss

  9. d scr888 fun says:

    The design and style of gentle should parallel the style that the buyer is searching for.
    In case the recipients Is often a girl, they usually are given basket full of chocolates and red red roses.

  10. A few popular sites pay numerous as $50 per article for guest bloggers
    who meet their requirements. Write orkginal content that offers unique help, and start making somke
    anchored backlinks. https://www.regionsjob.com/offer/redirect?Site=OuestJob&url=http%3A%2F%2Fonlinecasino4nl.com%2Fonline-casino-virtual-but-an-exciting-gaming-experience%2F

  11. A few pkpular sites pay numerous as $50 per article for guest bloggers who
    meet their requirements. Write original content that offers unique help, and start mqking some anchored backlinks. https://www.regionsjob.com/offer/redirect?Site=OuestJob&url=http%3A%2F%2Fonlinecasino4nl.com%2Fonline-casino-virtual-but-an-exciting-gaming-experience%2F

  12. A few popular sites pay numerous as $50 per article for guest bloggers who meet thir requirements.

    Write original contenht thaat ofers unique help, and start making some anchored backlinks. https://www.regionsjob.com/offer/redirect?Site=OuestJob&url=http%3A%2F%2Fonlinecasino4nl.com%2Fonline-casino-virtual-but-an-exciting-gaming-experience%2F

Leave a Reply

Your email address will not be published.