Glut1 DS community

Here's a selection of information from patients & professionals to better understand Glut1 DS.

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All Glut1 DS Events

  • "Wear That You Care" & "Million Mile Walk" for Rare Disease Awareness Day

    From 1 November 2011 to 29 February 2012

    On February 29, 2012 millions of people around the world will observe Rare Disease Day for the 5th year. This is the 4th year that the United States will join in. The Remi Savioz Glut1 Foundation has joined forces with NORD, EURODIS and "The Global Genes Project" and the "Wear That You Care Campaign" and the "Walk A Million Miles For Rare Disease Campaign" that will all take place on February 29, 2012. Rare Diseases affect over 250 million people worldwide, 30 million people in the US alone, with 75% affecting children. There are over 7,000 rare diseases that have been identified, all with very unique needs, but many with little to no support. Glucose Transporter Type1 Deficiency Syndrome otherwise referred to as Glut1 DS, is one of the 7,000 rare diseases. In order to make a significant impact and "Make A Difference" in the rare disease community and those affected by Glut1 DS and other disorders affected by Glucose Transporters such as diabetes, cancers and epilepsy, the Remi Savioz Glut1 Foundation needs your help to have these diseases be recognized as a part of a community of millions, impacted by disease. Rare disease is not so rare, and the community is much more likely to garner the support, attention, and resources it needs if it is viewed as one. It is estimated that 80% of rare diseases are caused by gene defects, and according to the Kakkis EveryLife Foundation, 95% of rare diseases do not have any FDA approved drug treatments. Since the Orphan Drug Act was enacted 28 years ago in January 1983, only 352 new drugs have been approved by the FDA for all rare diseases combined despite incentives by the federal government. The Global Genes Project exists to unify, support, build awareness and raise much needed funds for those affected by rare disease. The Global Genes Project campaign broadly promotes the needs of the rare disease community as a whole, engaging the general public, garnering corporate support under the unifying symbol of hope: the blue denim ribbon. The Remi Savioz Glut1 Foundation, together with The Global Genes Project, will wear a blue denim and tie-dyed ribbon to promote National Rare Disease Awareness Day. The Remi Savioz Glut1 Foundation is proud to partner with NORD, EURODIS and over 350 patient organizations, professional medical societies, and industry and with Global Genes Project, along with over 150 corporate, non-profit, research and professional organizations and universities, hospitals, rare disease organizations, government and policy organizations, media and educational sources and sponsors for the "Wear That You Care" Denim Awareness Campaign for Rare Disease Day. "Make A Difference" by joining us! Create an awareness and spread the word. It's as easy as wearing our ribbon, a tie-dyed piece of clothing, along with a pair of jeans on February 29, 2012. "Walk A Million Miles" and support those that suffer from Rare Disease. Donate $1.00 for each mile you walk and together we will "Make A Difference!" Join us and be part of our community today! (We would love to receive any pictures you have taken of yourself or others participating in the "Wear That You Care" or "Walking A Million Miles" campaign. Gather up a group of people and get involved as a community. Just email them to [email protected] and we will post them to our Face book page in honor of Rare Disease Awareness Day.) Together, we can enrich each others lives and the lives of millions who suffer from Rare Disease. •Organize a campaign at your school, place of work, youth group or club during the month of February or on Rare Disease Day, February 29, 2012. •To promote the Global Genes Project and your Wear Jeans Day campaign locally, and to receive a customized Global Genes Project poster featuring your individual with Glut1 DS or other disease affected by Glucose Transporters such as diabetes, cancer or epilepsy, send an email to [email protected] with your information. Please be sure to include your name, your individual's name and a photograph in either JPEG or GIF format. •100% of the funds raised through your local campaign and event will benefit the Remi Savioz Glut1 Foundations research and awareness initiatives. (A volunteer non-profit charity 501(C)(3).

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    On 17 January 2012

    Big Burrito restaurant group has generously donated 57 dinners to the RSG1 Foundation on January 17, 2012. Dinner will take place at Mad Mex in Robinson. Reservations Must Be Made In Advance!

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  • VII International Conference on Rare Diseases and Orphan Drugs (ICORD 2012)

    From 4 to 6 February 2012

    A global meeting on international cooperation and public health policies focusing on research, diagnosis, development of and access to treatment, and care for rare diseases, will be held in Tokyo. The VII ICORD Conference will offer a platform for the exchange of perspectives for medical and healthcare professionals, patients and patients’ groups, basic and clinical researchers, policy-makers, government officers and pharmaceutical, biotechnology and medical device industries.

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  • Rare Cancers Conference: Improving the Methodology of Clinical Research

    On 10 February 2012

    The European Society for Medical Oncology and Rare Cancers Europe have joined forces to present the first Conference addressing the scientific and educational needs of relevant stakeholder groups concerning challenges and potential solutions in the field of clinical research on rare cancers. The conference will take place in Brussels, Belgium.

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  • National Health Policy Conference

    On 13 February 2012

    The National Health Policy Conference (NHPC) provides clarity on the nation's critical health policy issues for the upcoming year and delivers a program with insider perspectives from health policy leaders to an audience that includes researchers, policy experts, and advocates. This event is taking place in Washington, D.C.

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  • 5th International Rare Disease Day 2012

    From 29 February to 1 March 2012

    February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries.On this day hundreds of patient organisations from more than 40 countries worldwide are organsing awareness-raising activities converging around the slogan “Rare but strong together”. Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand! United States participants can find more information here:

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  • 1st International Congress on Research of Rare and Orphan Diseases

    From 29 February to 2 March 2012

    Gebert Rüf Stiftung and BLACKSWAN Foundation, both active in supporting research activities in the field of rare diseases, are preparing the first “International Congress on Research of Rare and Orphan Diseases – RE(ACT)” in 2012. It will take place at the Gehry Building on the Novartis Campus, Basel/Switzerland from February 29th to March 2nd 2012. A superb setting for stimulating learning, exchange and networking. The “RE(ACT) Congress 2012” will bring together world leaders and young scientists from both university and industry to present cutting edge research, to discuss results and to exchange ideas.

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  • Second ASID Congress of the African Society for Immunodeficiencies

    From 8 to 11 March 2012

    Since its birth in Casablanca and during the last two years, ASID has been very active establishing a network involving colleagues of different regions of Africa including North, West and South African countries. Four schools have been already organized in Casablanca, Dakar and Johannesburg. This second congress will be an excellent opportunity to strengthen the capacity of colleagues all over the continent to better diagnose and manage patients with PIDs. The commitment and contribution of international experts, societies and associations to this process is highly appreciated.

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