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Rare Disease Day

  • We all know that there is not enough information or resources to support diagnostic and drug development on a scale to match our dreams.  It is time to change that.  We are finding ways to improve health with Registries for ALL.

    Individuals need to 'reclaim' their own health.  Reg4All is a place for us to register health information to grow health for ALL.

    Reg4ALL is community of people storing and sharing information about ourselves, our health, and our diseases– to improve health and speed therapies across all disease.

    Reg4All is unique in 2 ways:

    1. It operates across all health and disease. 

    2. Each participant controls everything about their information– what they store, what if anything they share, with whom they share, for what purposes that information may be used– everything. (Unlike systems that either a) allow only a single transaction consent, unnecessarily constricting sharing and bi-directional communication with researchers; or b) overreach in the breadth of their consent coverage to cover too many sharing scenarios)

    Reg4All is the health registry for all people, all diseases, all health.

    In 2012, we took our idea and competed for the Sanofi US Collaborate Innovate challenge and won!  They awarded us, Genetic Alliance and CFIDS Association of America, National Psoriasis Foundation, and the Inflammatory Breast Cancer Research Foundation, $300,000 to go forward with our idea.  That was December 11, 2012.

    Today, February 28, 2013, Rare Disease Day, we launch Registries for All (http://www.Reg4ALL.org).  

    Reg4ALL is an online health registry that's free and open to everyone.  Using fun and simple surveys (thanks to survey experts, Traitwise), users can register, store information about their health, and see how their answers compare with other users'.  Next, they can selectively share that information in whatever manner they feel comfortable, and use Reg4All to connect with the disease advocacy community and other helpful resources.  Finally, Reg4ALL aims to transform the way that medical research is done, and facilitate connections between researchers and potential participants - Reg4ALL is perfect for those who want to spark medical innovation and propel breakthroughs.  

    To make sure that all of the information in Reg4ALL respects the privacy and access wishes of the participants, we have partnered with Private Access, an industry leader in privacy and security.  But at Genetic Alliance, we understand that the members of our community are not interested in just keeping information locked away.  We want it to be used to improve the health of the people we care about - in a way that still respects our privacy.  To make this possible, Reg4ALL users can also connect with researchers and be pointed towards clinical trials that match their needs and desires. Every Reg4ALL user can configure Reg4ALL's unique privacy settings to reflect his or her own feelings about privacy, as simple or complicated as that may be.  For example, a user might consent to letting researchers see his data, but only some researchers, such as just those researchers who have a stamp of approval from an advocacy group that they know and trust.  Together, we can change the way that researchers and research participants connect, and accelerate health research like never before.  

    We see so much potential for Reg4ALL, and we hope you do, too.  Come join us at Reg4ALL.org, beginning today. Look forward with us to the full featured broad launch on April 5, 2013.  And if you need information about any one of 13,000 diseases, check out Disease InfoSearch

    Happy Rare Disease Day!

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