National Gaucher Foundation's Gaucher Disease Events Calendar
National Gaucher Foundation's Events Calendar
Aug 29, 2015 - Shire, Let’s Talk About VPRIV - Clayton (St. Louis), MOWhen:
Saturday August 29, 2015 11:30am
Let’s Talk About VPRIV
Carol Fisher, RN – Nursing Clinical Specialty Coordinator, Mount Sinai Hospital Medical Genetics
Pastaria by Niche
7734 Forsythe Boulevard
Clayton (St. Louis), MO 63105
Contact: 877-761-7927 to register
Sep 27, 2015 - Genzyme Interactive Discussion - Newton, MAGenzyme cordially invites you and your family to an interactive discussion and Lunch Program on:
All About Cerdelga™ (eliglustat) Capsules: A Patient’s Guide
Pramod Mistry, MD
Yale New Haven Hospital
12:00 PM on Sunday, September 27, 2015
Boston Marriott Newton
2345 Commonwealth Avenue
Newton, MA 02466
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 Patient Education Liaison, Valerie Banks at (207) 653-6624 or email firstname.lastname@example.org
Thank you for your interest in this Program, we hope to see you there!
Visit the Genzyme Patient & Caregiver Portal online: www.genzymesupportservices.com
Oct 1, 2015 - International Gaucher Day
More information coming soon.
Oct 17 - 19, 2015 - Psychological and cognitive impacts of Gaucher disease type 1The Psychosocial and Neurocognitive Impacts of Gaucher Disease, Type 1 on Pediatric and Young Adult Patients
Researchers from Palo Alto University are seeking participants between the ages of 5-25 and their parent(s) to participate in a study of the psychological and cognitive impacts of Gaucher disease type 1 on children, young adults, and family members. Researchers are available to meet at the National Gaucher Conference in Bethesda, MD, October 17-19.
Who can participate?
Children or young adults ages 5-25 with Gaucher disease type 1 and their parents.
• Participants will meet with a researcher at the National Gaucher Conference in Bethesda, MD. Researchers can meet on Saturday, October 17, the day before the conference, or during the conference on October 18 and 19.
• If you are interested in participating but are unable to attend the conference, researchers (contact information below) will be happy to arrange participation by phone/mail.
What to expect:
1. Parents will complete measures about their child or young adult’s health and psychological functioning. Parents will also complete measures about family functioning and demographics. It will take approximately 1 hour to complete parent measures.
2. The child or young adult will be asked questions about his or her quality of life, psychosocial, and cognitive functioning. Young adults will also participate in an interview about their experiences growing up with Gaucher disease. It will take approximately 35 minutes to complete the child measures, and 90 minutes for the young adult measures.
If you are interested in participating, please contact Andrea Alioto to schedule a meeting time: AAlioto@paloaltou.edu or visit GaucherStudy.com
Oct 18 - 19, 2015 - Gaucher Disease Conference - Bethesda, MDWelcome 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 email@example.com 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.
Oct 22, 2015 - Shire Educational Event - Providence, RIWhen:
Thursday, October 22, 2015
Free Educational Event about Type 1 Gaucher Disease
Patient Ambassador Jonathan
71 Bradford St.
Providence, RI 02903
Contact: 1-855-578-5349 to register by 10/19/15 or visit shireambassadorprograms.com
Oct 29, 2015 - Shire Educational Event - Las Vegas, NVWhen:
Thursday October 29, 2015
Free Educational Event about Type 1 Gaucher Disease
Patient Ambassador Deanna
Patient Ambassador Deanna
3925 Paradise Road
Las Vegas, NV 89169
Contact: 1-855-578-5349 to register by 10/26/15 or visit shireambassadorprograms.com
Nov 5, 2015 - Imagine & Believe - Boston, MAImagine & 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, FLNTSAD 38th Annual Family Conference
April 7-10, 2016
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