National Gaucher Foundation - Gaucher Disease
Slideshow Image 1
Slideshow Image 2
Slideshow Image 3

National Gaucher Foundation's Gaucher Disease Events Calendar

  • National Gaucher Foundation's Events Calendar

    • Jul 24, 2015 - Genzyme Interactive Discussion - Danville, CA

      Genzyme cordially invites you and your family to an interactive discussion and Dinner Program on:

      Living with a Chronic Illness

      Presented by:
      Kendra Bjoraker, PhD

      At:
      6:30 PM on Friday, July 24, 2015

      At:
      Piatti
      100 Sycamore Valley Rd W
      Danville, CA 94526

      Your Genzyme team will also be available to answer any questions you may have about Genzyme’s educational resources and support services.

      Please RSVP to Steve Gallup at (415) 203-4876 or via email steve.gallup@genzyme.com

      Thank you for your interest in this Program, we hope to see you there!

      Visit the Genzyme Patient & Caregiver Portal online: www.genzymesupportservices.com
    • Jul 25, 2015 - Genzyme Interactive Discussion - Santa Rosa, CA

      Genzyme cordially invites you and your family to an interactive discussion and Lunch Program on:

      Living with a Chronic Illness

      Presented by:
      Kendra Bjoraker, PhD
      Minneapolis, MN

      At:
      1:00 PM on Saturday, July 25, 2015

      At:
      Hyatt Vineyard Creek Hotel & Spa
      170 Railroad Street
      Santa Rosa, CA 95401
      (707) 284‐1234

      Your Genzyme team will also be available to answer any questions you may have about Genzyme’s educational resources and support services.


      Please RSVP to Steve Gallup, Claudia Hernandez (PEL) and Fran Egan (CM) at (415) 203‐4876 or email steve.gallup@genzyme.com

      Thank you for your interest in this Program, we hope to see you there!

      Visit the Genzyme Patient & Caregiver Portal online: www.genzymesupportservices.com
    • Aug 5, 2015 - Global Genes Webinar

      Optimizing Your Loved One’s Learning and Potential at School: Global Genes Webinar

      Rare diseases affect each child differently, and children living with rare conditions vary greatly with their educational, medical and social needs. In this webinar, expert panelists will offer general tips and strategies for parents who have children with rare conditions that affect their learning, while also describing ways to work with your child’s school to ensure an effective partnership is developed.

      If you have a school-aged child and would like to better advocate for your child's educational and social needs there, this webinar is for you! Register here:
      https://globalgenes.org/august2015webinar

      August 5, 2015
      11:00 a.m. Pacific Time
      2:00 p.m. Eastern Time
    • Aug 13, 2015 - Shire Educational Event - Providence, RI

      When:
      Thursday August, 13, 2015 at 6:30pm

      What:
      Free Educational Event about Type 1 Gaucher Disease

      Speaker:
      Patient Ambassadors Jonathan C.

      Where:
      Camille’s
      71 Bradford Street
      Providence, RI 02903

      Contact: 855-578-5349 to register by 8/10 or for more information
    • Oct 1, 2015 - International Gaucher Day



      More information coming soon.
    • Oct 18 - 19, 2015 - Gaucher Disease Conference - Bethesda, MD

      Welcome to the National Gaucher Foundation Inc’s. National Gaucher Conference
      In memory of John A. Barranger, MD PhD
      October 18 and 19, 2015

      Conference Registration Deadline:
      Monday, September 28, 2015


      Join the National Gaucher Foundation, Inc. for its 2015 National Gaucher Conference in memory of Dr. John A. Barranger. The one and a half day Conference will feature the top researchers and specialists in Gaucher disease to discuss the latest news and progress as it relates to all types of Gaucher disease. Topics of discussion will include drug therapy news, bone disease, Parkinson’s disease, Type 1, 2 and 3 research and developments, social and psychological issues and other areas of interest. The conference will feature physician panel discussions, Q&A sessions with top experts, and breakout groups. There will be plenty of time to visit with physicians, friends, and meet other families and individuals affected by Gaucher disease.

      Click here to register online.

      Download and print "offline" registration form here.

      Conference will be videoed and streamed live. As with the NGF’s 2010 conference, those unable to attend will have the opportunity to watch the conference live and ask questions throughout the day and a half conference. The Conference, in its entirety will be posted on the NGF’s website at www.gaucherdisease.org.

      Room Reservations and Conference location: The Conference will be held at the Doubletree Bethesda in Bethesda, Maryland located at 8120 Wisconsin Avenue. The NGF negotiated a discount room rate of $109/night at the Doubletree. For room reservations call: 800-445-8667 or 301-652-2000. Please make your hotel reservations online by September, 17, 2015 in order to receive this discount. To reserve your room, please click the link below. Whether contacting the hotel by phone or via internet, please refer to meeting code NGF. Click here to make online room reservations. The Doubletree is conveniently located near these three area airports: Baltimore/Washington Airport (BWI), Dulles Airport, and Reagan National Airport and The National Institutes of Health (NIH) are nearby.
      Click here for online room reservations.

      Agenda: The agenda includes topics and various issues selected by the Gaucher community, as a result of surveys and various discussions within the Gaucher medical community. We appreciate your input. To read/print the agenda and send it on to friends and family members click here.

      Dinner/Banquet:  Make plans to join us for our Banquet Dinner on October 18, 2015, featuring a memorial tribute to Dr. John A. Barranger. If you have any special dietary restrictions, please let us know when you fill out the Conference Registration form.

      Join in on the Conference Live Streaming: For those unable to attend the Conference, the NGF will be sending messages out via social media during breaks and after each day’s conference to keep you abreast of what’s going on. Join in the discussions and we will use some of your comments and questions during the Q & As after each segment of the conference.

      Program Book Ads: If you are connected in any way with Gaucher disease or other rare diseases you are invited to send the NGF ads for its Program Book. The ads can be in honor of and/or in memory of others and will be part of the Book. The invitation is also extended to those who have a rare disease or have family members with a rare disease. Companies, institutions, organizations and corporations who provide goods and services to the rare disease community are also invited to submit an ad. Ad Deadline: Monday, September 7, 2015.  Ad Specs: Program Book size is 11" wide x 8 1/2" deep. Full page color: $500; Specs: Non-bleed - 11" deep x8 1/2” x 11" wide or for bleed ads (ads that are the full depth and width of the 11 x 8 1/2 page) add 1/8th" all around - Half page color: $300. Specs: 5" deep x 8" wide. Email your PDF to rosina@gaucherdisease.org and please use Conference Program Ad in the subject. These specs and deadline also apply to those organizations who are sponsors.

      Sponsorships: The NGF invites anyone connected to the Gaucher community to participate in a sponsorship. Whether it’s a company, institution, organization, individual, family or friend there are sponsorships available. Those organizations that provide goods and services to the Gaucher community are encouraged to become a sponsor of the NGF’s National Gaucher Conference. Thank you for your support. If you would like to become a sponsor, please contact Sharon Adams at the NGF by no later than Monday, August 10, 2015, so that we can include you in our program book.
      Click here for sponsorship levels.

      Scholarships: *A limited number of scholarships are available on a first come, first served basis. The enrollment period will be June 1 to July 31, 2015.
      Click here for Scholarship Application.
    • Nov 5, 2015 - Imagine & Believe - Boston, MA

      Imagine & Believe Annual Boston fundraiser Thursday, November 5th

      An Inspiring Evening to benefit NTSAD, our families and research. Every fall NTSAD hosts this special fundraiser in the Boston area to benefit its programs and support services.
    • Apr 7 - 10, 2016 - NTSAD 38th Annual Family Conference - Orlando, FL

      NTSAD 38th Annual Family Conference
      April 7-10, 2016
      Orlando, FL.

      A Family Gathering
      The NTSAD Annual Family Conference is the cornerstone of our exceptional Family Support Services. It provides over 200 parents, grandparents,affected children, healthy siblings, affected adults and their families the unique opportunity to: gather with people that truly understand; learn about latest research and symptom management approaches; and discuss other important topics.
    NGF Sponsored Patient Meeting
    Non-NGF Sponsored Patient Meeting
    Event