National Gaucher Foundation - Gaucher Disease
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National Gaucher Foundation's Gaucher Disease Events Calendar

  • National Gaucher Foundation's Events Calendar

    • May 2, 2015 - World of Possibilities disAbilities Expo - Timonium, MD

      Don't miss this GREAT opportunity to showcase your goods & services to over 1500+ people!

      Caring Communities is bringing the WORLD OF POSSIBILITIES disAbilities EXPO ​is bringing the Expo back to Timonium, MD on May 2, 2015!-see flyer below for dates). For individuals with disabilities and those who love and serve them. Don't miss this!! For info about Caring Communities, please see http://expo.caringcommunities.org/index.php Application, see http://expo.caringcommunities.org/pdf/wp_exhibitor_packet.pdf. We are accepting applications now.

      Everyone within the disabilities and senior community, children with disabilities and their families, caregivers/service providers, veterans with disabilities and baby-boomers etc. should be there!

      Features include:
      FREE WHEELCHAIR REPAIR!!
      FREE PARKING
      • Durable Medical Equipment
      • Assistive and Adaptive Devices
      • Computer Software
      • Instructional Materials
      • Mobility Products
      • Adaptive Learning Tools
      • Disability and Elder Law Resources
      • Recreation/Travel Resources
      • Adapted Bikes/Adapted Exercise Equipment
      • Personal Care Products
      • Communication Devices
      • Products for the Visually Impaired and/or Deaf or Hard of Hearing Individuals
      • Local Agencies and Support Groups
      • Product Demonstrations

      For more information please email mona@caringcommunities.org or for FREE passes, click on http://expo.caringcommunities.org/index.php
    • May 8, 2015 - Genetic Alliance presents virtual session for advocates

      Dear Advocate,

      Did you know microarray analysis is one of the fastest growing technologies in genetics and helps clinicians detect chromosomal changes that may be responsible for developmental delay, intellectual disability, congenital anomalies and dysmorphic features? Please join us for a special opportunity to learn more about the expanding field of microarray testing and to share your views. Genetic Alliance is hosting a focus group webinar about microarray technology. This will be a time to learn and address questions, concerns, and ideas about the future of microarray testing in the clinical setting. Gaining insight into the cause of genetic conditions through utilizing microarray technology may impact clinical management of children and adults living with these issues.

      We invite leaders of advocacy organizations to share your questions, comments, and ideas about the increase use of microarray testing in clinical settings. On May 8th at 1pm EST we will host the 1.5 hour virtual session. The time will be split between presentations and an open discussion forum. For your time and participation we will offer a $100 donation to your organization (one donation per organization though more than one person may join from each organization). Please contact me at nbonhomme@geneticalliance.org to RSVP. Space is limited.

      It is important to share you opinions as leaders of advocacy organizations to help shape the testing landscape for the public.

      This activity is supported by an educational grant from: Affymetrix, Inc.

      Sincerely,
      Natasha

      Natasha F. Bonhomme | Vice President of Strategic Partnership Genetic Alliance | 4301 Connecticut Ave., NW | Suite 404 | Washington, DC 20008-2369 Phone: 202.966.5557 x211 | Fax: 202.966.8553 | nbonhomme@geneticalliance.org | http://www.geneticalliance.org | Donate: GeneticAlliance.org/donate (Donations are tax deductible)

      Director, Baby’s First Test | BabysFirstTest.org | Twitter: @BabysFirstTest Because Every Baby Deserves a Healthy Start
    • Jun 27 - 30, 2015 - Conference on Children's Bone Health - Salzburg, Austria

      7TH INTERNATIONAL CONFERENCE ON CHILDREN'S BONE HEALTH

      The aim of this Conference is to bring together scientists and clinicians from a wide range of disciplines and from across the globe to gain a better understanding of the growing skeleton in health and disease. The scope ranges from basic molecular mechanisms to clinical aspects, from bone physiopathology to treatment. Attendees will have an interest in rare and inherited bone disorders, general aspects of bone metabolism and bone mass in children, adolescents and young adults.

      More information about this event...

      EVENT DETAILS

      WHEN
      Jun 27, 2015 01:00 PM to
      Jun 30, 2015 01:00 PM

      WHERE
      Salzburg, Austria

      CONTACT NAME
      Janet Crompton

      CONTACT PHONE
      441453549929
    • 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: Full page color: $300; Specs: 10” deep x 7” wide - Half page color: $150. Specs: 5” deep x 4” 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.
    NGF Sponsored Patient Meeting
    Non-NGF Sponsored Patient Meeting
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