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

  • National Gaucher Foundation's Events Calendar

    • Jun 8 - Jul 10, 2015 - Gaucher Research Studies

      We are conducting interviews as part of a research study to help us understand how patients with Type 1 Gaucher Disease select treatments and what experiences patients have had with the treatment options currently available. As one of these patients, you are in an ideal position to give us valuable first hand information from your own perspective.

      We are offering the option of either participating in a telephone interview or participating in-person at a market research facility in New York City. Both will take around one hour to complete, and the information you provide will be kept confidential. Each interview will be assigned a number code to help ensure that personal identifiers are not revealed during the analysis and write up of findings.

      This research will take place between Monday, June 22nd – Friday, July 10th, but in-person interviews will only be offered on Monday, June 8th.

      To thank you for your time, you will receive an honoraria payment of $45 if you elect to participate in a telephone interview, or $100 if you elect to participate in an in-person interview. If you are interested in participating or would like additional information about this study, please contact:

      Shelah Getzenberg
      215.561.5500, ext. 4521
      sgetzenberg@focuspointe.org

      Additional information about this research study is also provided below.

      Thank you,

      Research Partnership

      About Us

      Research Partnership is an independent medical market research agency that has specialized in medically-focused market research for more than 15 years. While this research is sponsored by a pharmaceutical company, please be assured everything you say will be kept strictly confidential. We adhere to strict privacy policies to ensure the identities of all participants are not disclosed to any third parties. For this study, we are working with Focus Pointe Global who will be responsible for scheduling interviews and issuing honoraria payments. No one else, including Research Partnership and the pharmaceutical company sponsoring this research, will have access to your contact information without your prior approval. To learn more about Research Partnership, please visit www.researchpartnership.com. To learn more about Focus Pointe Global, please visit www.focuspointeglobal.com.

      Compensation Information

      All honoraria payments will be issued by Focus Pointe Global upon completion of the interview in the form of a check. When you schedule your interview, they will collect the information needed to issue this payment and provide you with their contact information so you can contact them in the event that you do not receive your payment in a timely manner. If you participate in an in-person interview, your payment will be issued at the facility upon completion of the interview.

      Information about In-person Option

      In-person interviews will be held at:

      Fusion Focus
      373 Park Avenue South
      10th Floor
      New York, NY 10016
      Tel. (212) 889-4777

      on Monday, June 8th. This will be the only day when these interviews are offered, and space is limited. If you elect to participate in-person, please be aware that interviews may be viewed by Research Partnership and/or the pharmaceutical company sponsoring this research. Your personal information will remain strictly confidential to ensure no observer becomes aware of your identity.
    • Jun 14, 2015 - NGF Educational Meeting - Chicago, IL

      Please Join The National Gaucher Foundation, Inc. and the Ann & Robert H. Lurie Children’s Hospital of Chicago for Lunch and an Educational Meeting about Gaucher Disease

      Hosted by:

      Joel Charrow, MD
      Professor of Pediatrics, Feinberg School of Medicine, Northwestern University
      Head, Division of Genetics, Birth Defects and Metabolism,
      Ann and Robert H. Lurie Children's Hospital of Chicago
      "Genetic Testing for Gaucher Disease and Newborn Screening"

      Guest Speaker:

      Kendra J. Bjoraker, PhD, LP
      3:1 Neuropsychology Consultants, PLLC
      "Living with a Chronic Condition: Quality of Life"

      When
      Sunday, June 14, 2015
      11:30 a.m. - 3:30 p.m.

      Where
      The Palmer House Hilton
      17 East Monroe Street
      Chicago, IL 60603

      Valet Parking Provided

      How can YOU best cope with Gaucher?
      Ask Questions • Meet Others • Gather Information • Stay in the Loop
      We are a welcoming community of patients, families, friends and medical professionals.

      RSVP to Cyndi Frank by Monday, June 8, 2015
      Cyndi@gaucherdisease.org or 877.649.2742

      Meeting supported by Genzyme, a Sanofi Company, and Pfizer.
    • Jun 15, 2015 - Pfizer Educational Program - Newton , MA

      Pfizer Cordially Invites You to Attend
      An Educational Program

      Featuring

      Neal Weinreb MD
      Miller School of Medicine at the University of Miami

      An Introduction for Patients and Their Families to Gaucher Disease and a Treatment Option

      Monday, June 15, 2015
      6:30 PM Registration
      Dinner and Presentation to Follow

      Jewish Community Centers of Greater Boston and Leventhal-Sidman JCC
      333 Nahanton Street,
      Newton , MA 02459
      (617) 558-6522

      Hosted by David Bowers

      Please RSVP to the Patient Affairs Liaison at 1-866-212-1600 or pfizerprograms@pfizer.com

      Thank you!
    • 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
    • Jun 28, 2015 - NGF Educational Meeting - Atlanta, GA

      Please Join The National Gaucher Foundation, Inc. And Emory Healthcare Lysosomal Storage Disease Department For Lunch And An Educational Meeting About Gaucher Disease

      Hosted by:

      William Wilcox, MD, PhD
      Professor of Human Genetics, Emory University School of Medicine
      "Gaucher, Bones and Multiple Myeloma"

      Guest Speakers:

      Wendy Packman, JD, PhD
      Professor of Psychology, and Director, JD-PhD Program in Psychology and the Law, Palo Alto University; Adjunct Clinical Professor, Pediatrics, University of California San Francisco
      "Psychosocial Aspects of Living with Gaucher Disease"

      Emily Lisi, MS CGC
      Genetic Counselor, Clinical Instructor, Emory University Dept. of Human Genetics
      "Clinical Research Studies at Emory Involving Individuals with Gaucher Disease: The Impact of Social Media on Patients with Fabry and Gaucher Diseases and Newborn Screening Perceptions of Patients with Later Onset LSDs"

      When
      Sunday, June 28, 2015
      11:30 a.m. - 3:30 p.m.

      Where
      Hyatt Place Buckhead
      3242 Peachtree Road NE
      Atlanta, GA, 30305

      Complimentary Parking Available

      How can YOU best cope with Gaucher?
      Ask Questions • Meet Others • Gather Information • Stay in the Loop
      We are a welcoming community of patients, families, friends and medical professionals.

      RSVP to Cyndi Frank by Monday, June 22, 2015
      Cyndi@gaucherdisease.org or 877.649.2742

      Meeting supported by educational grants from Genzyme, a Sanofi Company, and Pfizer.
    • Jul 26, 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: 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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