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

  • National Gaucher Foundation's Events Calendar

    • Apr 21, 2014 - Boston Marathon & Running for Rare Diseases

      The third Monday of every April
      Boston Marathon & Running for Rare Diseases
      The world's oldest annual marathon (begun in 1897), the Boston Marathon is probably the most well-known and respected road race that includes fundraising for charitable causes. Millions of dollars are raised each year for dozens of charities. Among the many runners who run for a charitable cause is Genzyme’s own Running for Rare Diseases team, a group of Genzyme employees who run the marathon to raise awareness and funds for the National Organization for Rare Diseases (NORD).
    • Apr 23, 2014 - Shire Ambassador Program - Albany, NY

      Join us for an educational event about living with type 1 Gaucher disease

      - Learn more about type 1 Gaucher disease
      - Listen to a person living with Gaucher disease share their story
      - Hear how one person has managed living with their disease

      Register today for this FREE event

      "My vision is to help Gaucher patients to be empowered individuals. One by one, together we can spread the word and make a difference."
      - Dawn, Shire Ambassador living with type 1 Gaucher disease

      When
      Wednesday, April 23, 2014
      Registration Time: 5:30 PM
      Meeting Time: 6:00 PM

      Where
      The Standard
      1 Crossgates Mall Road
      Albany, NY 12203

      Family and friends are welcome to attend.
      Dinner and complimentary parking will be provided.

      Please register by 4/18/2014
      Call 1-855-578-5349 or visit ShireAmbassadorPrograms.com

    • Apr 23, 2014 - Shire Ambassador Program - Plano, TX

      Join us for an educational event about living with type 1 Gaucher disease

      - Learn more about type 1 Gaucher disease
      - Listen to Shire Ambassadors living with Gaucher disease share their stories
      - Hear how others have managed living with their disease

      Register today for this FREE event

      - Featuring Wayne R. and Brian D

      When
      Wednesday, April 23, 2014
      Registration Time: 6:30 PM
      Meeting Time: 7:00 PM

      Where
      The Capital Grille
      7300 Dallas Parkway
      Plano, TX 75024

      Family and friends are welcome to attend..
      Dinner and complimentary parking will be provided.

      Please register by 4/18/2014
      Call 1-855-578-5349 or visit ShireAmbassadorPrograms.com

    • May 8, 2014 - Honoring NTSAD New York - New York, NY

      Honoring NTSAD New York

      It is my pleasure to invite you to celebrate the NTSAD New York Area Chapter, its accomplishments raising awareness in the Tri-state region, and generously funding ground-breaking research. The evening proceeds will support the continued good works of the New York Area Chapter of NTSAD.

      It is also our honor to recognize the incomparable Marion Yanovsky for giving her heart and soul to NTSAD for almost 50 years. We are pleased to have Dr. Ed Kolodny join us to reminisce with Marion while we thank her for her leadership during her years with the New York Area Chapter of NTSAD.

      When
      Thursday May 8, 2014 from 6:30 PM to 9:00 PM EDT

      Where
      Millesime Restaurant (in the Carlton Hotel)
      92 Madison Avenue
      New York, NY 10016

      Please RSVP
      by Wednesday, April 30th.

      Tickets are $125 per person.

      You can RSVP online, mail to NTSAD, 2001 Beacon Street, Suite 204, Boston, MA 02135, or contact me at joan@ntsad.org.

      And if you would like to be a sponsor, submit an ad for the evening's program book, you can do that along with your RSVP, or contact me as well at joan@ntsad.org.

    • Jun 10, 2014 - FDA Public Meeting - Silver Spring, MD

      Invitation to FDA Public Meeting on Neurologic Manifestations of Inborn Errors of Metabolism

      Dear patient stakeholder,

      We invite you to attend an upcoming public meeting on neurologic manifestations of inborn errors of metabolism, as part of FDA’s Patient-Focused Drug Development initiative. The goal of the meeting is to hear patient perspectives on the impact of neurologic manifestations of inborn errors of metabolism on daily life as well as patient views on treatment approaches for neurologic manifestations of inborn errors of metabolism.

      Date: June 10, 2014
      Time: 9:00 am - 1:00 pm
      Location: FDA White Oak campus at 10903 New Hampshire Avenue, Silver Spring, MD

      Remote access will be available via live webcast for those unable to attend in person.

      The patient voice is integral to FDA’s Patient-Focused Drug Development initiative. Patient representatives, such as caretakers or leaders of support groups, are also welcome to attend and share their perspectives. We encourage you to spread the word to your peers, patients, and other patient stakeholders by forwarding on this email and sharing through social media.

      In-person and web attendees can register
      here:
      www.patientfocusediem.eventbrite.com. Please register by May 27, 2014. Patients and caretakers who are attending in person and are interested in providing comments as part of an initial panel discussion may indicate so in their registration. Panelists will be confirmed prior to the meeting.

      A public comment docket is also available, which provides patients and others another opportunity to share their experiences and perspectives with FDA online or through the mail.

      For more information, visit the FDA website:
      www.fda.gov/Drugs/NewsEvents/ucm387057.htm

      We look forward to this exciting meeting and hope to see you there. If you have any questions, please feel free to contact us at PatientFocused@fda.hhs.gov.

    • Jun 29, 2014 - What’s New at NYU Langone Medical Center - New York, NY

      What’s New at NYU Langone Medical Center

      Langone Medical Center will be hosting a program for children and adolescents with Gaucher’s Disease and other related Lysosomal Storage Diseases, on Sunday July 13, 2014 from 11:00 am – 2:00 pm at the NYU Langone Center for Musculoskeletal Care. They will also be hosting a program for adults with Gaucher’s Disease and other related Lysosomal Storage Diseases, on Sunday June 29, 2014 from 11:00 am – 2:00 pm at the NYU Langone Center for Musculoskeletal Care. Both programs will focus on:

      - Management of Gaucher’s Diseases and related Lysosomal Storage Diseases –
           - Including Hematology Related Issues (Multiple Myeloma and Platelets during Pregnancy)
           - Endocrine Related Issues (i.e., Osteopenia and Osteoporosis)
           - Update on Therapies (Current and New)
      - Coping with a Chronic Illness and Pain, Including Pet Therapy
      - Health and Nutrition: Incorporating Nutrition and Fun into Your Diet

      The Infusion Center at NYU Langone’s Center for Musculoskeletal Care (CMC)
      333 EAST 38TH ST (BETWEEN FIRST & SECOND AVES) 4TH FLOOR
      New York, NY 10016
      Tel: (646) 501-7400, Fax: (646) 501-7228
    • Jul 13, 2014 - What’s New at NYU Langone Medical Center - New York, NY

      What’s New at NYU Langone Medical Center

      Langone Medical Center will be hosting a program for children and adolescents with Gaucher’s Disease and other related Lysosomal Storage Diseases, on Sunday July 13, 2014 from 11:00 am – 2:00 pm at the NYU Langone Center for Musculoskeletal Care. They will also be hosting a program for adults with Gaucher’s Disease and other related Lysosomal Storage Diseases, on Sunday June 29, 2014 from 11:00 am – 2:00 pm at the NYU Langone Center for Musculoskeletal Care. Both programs will focus on:

      - Management of Gaucher’s Diseases and related Lysosomal Storage Diseases –
           - Including Hematology Related Issues (Multiple Myeloma and Platelets during Pregnancy)
           - Endocrine Related Issues (i.e., Osteopenia and Osteoporosis)
           - Update on Therapies (Current and New)
      - Coping with a Chronic Illness and Pain, Including Pet Therapy
      - Health and Nutrition: Incorporating Nutrition and Fun into Your Diet

      The Infusion Center at NYU Langone’s Center for Musculoskeletal Care (CMC)
      333 EAST 38TH ST (BETWEEN FIRST & SECOND AVES) 4TH FLOOR
      New York, NY 10016
      Tel: (646) 501-7400, Fax: (646) 501-7228
    • Nov 09-10, 2014 - National Gaucher Conference

      Save The Date

      2014 National Gaucher Conference

      When:
      Nov 9 and 10, 2014

      Where:
      Doubletree by Hilton
      Bethesda - Washington, DC
      8120 Wisconsin Avenue
      Bethesda, MD 20814

      (Details to follow)
    NGF Sponsored Patient Meeting
    Non-NGF Sponsored Patient Meeting
    Event