Calendar of Events

The listing of any event, or information about any event, or external web page(s) on the Lysosomal Disease Network web site does not imply or express any endorsement or guarantee of that event, that event information, or of any information on that external web page.

15th Annual WORLDSymposium

February 4-8, 2019 in Orlando, Florida, USA

Registration for the 15th Annual WORLDSymposium is open. WORLDSymposium™ 2019 will convene at Hyatt Regency Orlando, 9801 International Drive, Orlando, Florida, 32819. A limited block of Hyatt Regency Orlando discounted hotel rooms was available until January 4, 2019 or until the discounted room block filled, whichever occurred first. Additionally, a room block was made available at The Rosen Centre (across the street from the Hyatt Regency Orlando) at a special rate of $229. To inquire about Rosen Centre room-availability at this time, call the hotel directly at: +1 866-996-6338, being sure to mention the code phrase ‘GRPWorldSymposium.’

Categories for abstracts submitted to WORLDSymposium™ 2019 have expanded. Submissions can be accepted in two Basic Science categories, three Translational Research categories, or two Clinical Applications categories. The deadline for submitting an abstract to WORLDSymposium™ for review by the Program Committee was October 1, 2018. Details on the new abstract categories, as well as the abstract submission process, various deadlines, and guidelines for authors and abstracts are available. Be sure to sign-up for updates about WORLDSymposium™ 2019!

2019 FSIG Expert Fabry Conference

February 8-10, 2019 in Orlando, Florida, USA

Join FSIG for their annual gathering of the Fabry disease patient community! The 2019 conference is convening at Renaissance Orlando at Sea World, 6677 Sea Harbor Drive, Orlando, FL 32821.

A modest conference fee will cover conference meals and rooms for those with Fabry disease and their immediate family members, but you must register by January 3, 2019 to qualify. Additionally, this offer is on a first-come, first-served basis: discounted rooms are limited to the first 40 registrants. Also, be sure to download the document entitled “2019 FSIG Expert Fabry Conference” and complete & submit the registration form, which is on page 2 of the document.

Cystinosis Research Foundation
Day of Hope Family Conference
and Natalie’s Wish Celebration

March 28-30, 2019 in Newport Beach, California, USA

Join the Cystinosis Research Foundation and Natalie’s Wish at the Fashion Island Hotel in Newport Beach, California for its Day of Hope Family Conference and Natalie’s Wish Celebration. Family Conference topics, speakers list, and registration forms for the Day of Hope Family Conference are now available. The Natalie’s Wish Celebration inspirational evening on March 30th will be highlighted with special entertainment featuring Matt Mauser, his Frank Sinatra-tribute big band, and The Tijuana Dogs. Sponsorship opportunities abound!

RARE on the Road

March 30, 2019 in Boston, Massachusetts, USA

The EveryLife Foundation and Global Genes® co-host this rare disease leadership tour to bring critical education and insights to patients, caregivers and other advocates on topics such as patient advocacy, legislation, and more essential topics. In addition to March 30, 2019, the event is touring to:

• May 4, Birmingham, Alabama
• May 18, Denver, Colorado
• July 13, Sioux Falls, South Dakota

Check the web page for fresh updates, or e-mail Carol Kennedy at EveryLife Foundation for more details.

American Society of Gene and Cell Therapy
22nd Annual Meeting

April 29–May 2, 2019 in Washington, D.C., USA

ASGCT’s 22nd Annual Meeting will take place at the Washington Hilton. Early-bird registration rates are available through April 8, 2019, and groups of five or more are eligible for an additional 15 percent discount. Non-members are invited to apply for membership when they register, to earn the member discount on their registration. Abstract submission opened on October 17, 2018, and the Abstract submission deadline is January 16, 2019. Importantly, there will be no Late Breaking Abstract submission process for the ASGCT 22nd Annual Meeting. Associate Members who are the first and presenting author on an abstract will receive free registration for the ASGCT 22nd Annual Meeting. Please Note: The amount of time required to obtain a VISA has increased tremendously. Abstract submitters can generate invitation letters online during Abstract submission, so they can apply for their VISA immediately after submitting an abstract. Attendee registration opened on December 1, 2018 and hotel room reservations can be made now. Make your hotel reservations as soon as possible, because the housing block will sell out well before the Annual Meeting. After the ASGCT block is completely full, there’s no guarantee attendees will be able to get the same room rate during the meeting.

Meritorious Abstract Travel Awards: ASGCT will be offering Meritorious Abstract Travel Awards to Associate Members (students or postdoctoral fellows) who have submitted abstracts and received an average review score of between 1 and 3.5. Submitters must be Associate Members at the time of submitting their abstract to qualify for Travel Awards. There is not a separate application for travel grants. Submitters must sign-up for a travel grant during the abstract submission process.

Poster Production Funding: In 2019, ASGCT will once again pay for poster production for 30 Associate Members. Submitters must be Associate Members at the time of submitting their abstract to qualify for poster production funding. Poster production recipients will be chosen based on abstract review scores and a determination of the ASGCT Abstract Review Committee. Poster production for those selected will be through an online system.

Underrepresented Minority Travel Awards: ASGCT will offer a limited number of Underrepresented Minority Travel Awards for students and postdoctoral fellows submitting abstracts for the meeting. The top candidates for this award, based on average score, will receive a $500 travel award to the 22nd Annual Meeting. Candidate must be a U.S. resident and self-identify as belonging to one of the following groups: African American, Pacific Islander, Hispanic, Native American, Inuit, or Aleut. Candidate must be an Associate Member of ASGCT and the first and presenting author of an abstract being submitted for the 22nd Annual Meeting. After reading their web pages, you may e-mail the ASGCT for more information.

6th Update on Fabry Disease:
Biomarkers, Progression and Treatment Opportunities

May 26-28, 2019 in Prague, Czech Republic

Kidneys for Life (of the Manchester Royal Infirmary in Manchester, UK) is the supporting organization of the 6th Update on Fabry Disease which will convene at Prague Marriott Hotel. Charles University and its First Faculty of Medicine are the hosts for this meeting, which will focus on emerging treatment approaches, baseline characteristics that determine the patient-specific responses to the treatment of Fabry disease, and antibody interactions with infused enzyme replacement therapy. The meeting’s program is available. Pre-registration applications are available via online sign-up. The fee for the pre-registration application is $50 and that will be collected only after the application has been approved, and will be credited to the full registration fee.

The abstract submission deadline is March 31, 2019. First authors of abstracts qualify for reduced registration fee and possibly a travel stipend. One author can submit up to two abstracts as first author. The first author must have completed pre-registration and be approved for the conference before submitting their abstract. Depending on available funding, the organizers anticipate providing travel stipends to poster presenters (first authors) who have primary academic affiliations. Accepted abstracts will be invited to be presented as posters, and the top four posters will be invited to present a 10-minute oral presentation at the meeting. Additionally, all accepted abstracts will be published as a special online supplement to Nephron in April 2019. The supplement will be assigned a DO1 number and will be indexed and citeable as an online publication.

Rare Drug Development Symposium

June 7, 2019 in Philadelphia, Pennsylvania, USA

Global Genes® is partnering with the University of Pennsylvania Orphan Disease Center to host this fourth annual event, which was developed to help attendees learn about the drug development process. It is being held in conjunction with UPenn’s annual Million Dollar Bike Ride.

Check the Global Genes® web page for fresh updates, or e-mail M. McLaughlin at Global Genes® for more details.

2019 Parseghian Classic at
Pebble Beach

June 21-24, 2019 at California’s Monterey Peninsula, USA

The 2019 Parseghian Classic, a golf fundraiser benefiting Niemann-Pick disease type C research at University of Notre Dame, will be held at Pebble Beach Resorts, in California. There are four differently-priced event packages to choose from, and non-golfers are also welcome. Event Registration fees include lodging for Friday, Saturday and Sunday at The Lodge at Pebble Beach™ and all scheduled activities. Kimberly Kirkpatrick at Notre Dame is available to answer your questions.

ISMRD — The International Advocate
for Glycoprotein Storage Diseases
6th Glycoproteinoses International Conference

July 25-27, 2019 in Atlanta, Georgia, USA

Details are not yet released for the next ISMRD international gathering, which will be the 6th Glycoproteinoses International Conference. Keep checking their web site for the freshest updates, or e-mail the ISMRD. The ISMRD is an internationally focused not-for-proft organization whose mission is to advocate for families and patients affected by one of the following disorders: alpha-mannosidosis, beta-mannosidosis, aspartylglucosaminuria, fucosidosis, galactosialidosis, sialidosis (mucolipidosis I), mucolipidosis II, II/III, or III alpha/beta, mucolipidosis III gamma, and Schindler disease.

RARE Patient Advocacy Summit

September 18-20, 2019 in San Diego, California, USA

Global Genes® ‘RARE Patient Advocacy Summit‘ gives rare disease stakeholders the opportunity to connect and learn through educational sessions and networking opportunities. Attracting more than 800 attendees, it is the largest gathering of rare disease patients, advocates and thought leaders worldwide. This year’s summit convenes at Sheraton San Diego Hotel & Marina.

Online registration will open in March 2019. Check the Global Genes® web page for fresh updates, or e-mail Global Genes® for more details.

2019 AGSD Patient/Family/
Medical Conference

September 20-21, 2019 in Houston, Texas, USA

The 2019 Association for Glycogen Storage Disease family/medical conference for those affected with GSD, their families, and medical professionals involved in treatment or research of any type of GSD, is in the planning stages at this time. The focus of this annual conference is meeting other people and families affected by GSD, gaining a better understanding of the GSDs and their implications, and learning about the latest research findings and upcoming studies. Their web page will be updated as new information becomes available.

If you would like your event listed here, please send it to the web master.

The listing of any event, or information about any event, or external web page(s) on the Lysosomal Disease Network web site does not imply or express any endorsement or guarantee of that event, that event information, or of any information on that external web page.


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