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.

The Parseghian Classic

June 22-25, 2018 at Pebble Beach, located on the Monterey Peninsula in California, USA

The Parseghian Classic is a golf fundraiser benefiting Niemann-Pick disease type C (NPC) research. Four different registration package-deals are being offered. Package rates include a portion which is a tax-deductible charitable donation to the Ara Parseghian endowment at Notre Dame University to support NPC research. The research is carried out at Notre Dame University and at other qualified institutions. Registration fees include lodging for Friday, Saturday and Sunday at The Lodge at Pebble Beach™ and all scheduled activities. Golf is played at Pebble Beach Golf Links® and Spyglass Hill® Golf Course. There is also an optional non-golfer group excursion for an additional $125 per guest. Please e-mail Kim Kirkpatrick or phone her at 574-631-3136 to pre-register.

Little People of America, Inc.
61st Annual LPA National Conference

July 6-13, 2018 in Orlando, Florida, USA

The LPA‘s 61st Annual National Conference in Orlando is at the Hyatt Regency Orlando Hotel. Complete information covering every aspect of the Conference is now available. Little People of America, Inc. includes persons who have MPS IVA (Morquio syndrome type A).

The Next Revolution: Genome Engineering 2018

July 19-21, 2018 in Minneapolis, Minnesota, USA

The Genome Writers Guild is holding its second national meeting in collaboration with the University of Minnesota Center for Genome Engineering, the Medical College of Wisconsin, and the Mayo Clinic, in the McNamara Alumni Center on the University of Minnesota Campus. This event will include leading scientists, industry representatives, entrepreneurs, and policy-makers focusing on genome engineering and gene editing. Academic talks include presentations from the Center for Genome Engineering at the University of Minnesota, Stanford University, Mayo Clinic, Harvard University, The Broad Institute, Iowa State University, and others from around the United States. This annual conference highlights the fast pace of genomic engineering with recent research, tangible skills for the laboratory, and discussions on the challenges of social responsibility we all share.

Early bird registration ended June 1st. There are four hotels within walking distance of the conference venue: hotel a, hotel b, hotel c, and hotel d.

Batten Disease Support and Research Association’s
2018 Family Conference

July 19-22, 2018 in Nashville, Tennessee, USA

The BDSRA‘s 2018 Family Conference will convene at the Nashville Airport Marriott. Last year over 450 family members, children, and researchers attended to learn about patient care, education, and the latest research. As in years past, attendees have access to experts sharing research posters and helping to answer questions, connect with other parents, and attend sessions while medical care is provided for their child. The BDSRA also features their “SIB program” for siblings of affected children, with fun outings and other activity sessions. Download their tentative Conference Program for an in-depth grasp of this amazing Conference! Conference registration is open, and the deadline to register and be guaranteed to receive a Conference t-shirt is June 27, 2018. Additionally, all hotel reservations must be made by June 27, 2018 in order to secure the discounted rate. There’s a Conference Facebook page of interest.

Enzymes, Coenzymes & Metabolic Pathways
Gordon Research Conference

July 22-27, 2018 in Waterville Valley, New Hampshire, USA

The Chairs of this Conference are Holly R. Ellis & Kay Ahn. Applications for this meeting must be submitted by June 24, 2018. (Registration for this meeting is not the same as application. Before registering for the meeting, you must first apply to attend the Conference, and then be accepted by the Chair of the meeting. Once you have been accepted to the meeting, you may then complete the registration process.) For questions about application status, registration, payments, receipts, refunds, posters or site/travel information, please contact Brenda Figueroa. For questions about the Conference program, please send an email to GRC Program Updates.

15th International Symposium on MPS
and Related Diseases

August 1-4, 2018 in San Diego, California, USA

This symposium is being organized by the International MPS Network. The International MPS Network is the official body of the patient associations representing MPS and MPS societies at a European and global level. Membership in the International MPS Network is only open to the one nationally-recognized MPS Society or relevant patient association for each country globally. Up to two representatives from each accepted MPS Society or relevant patient association may attend the International MPS Network Meetings. There is no membership fee; however, member organizations are responsible for meeting the costs of their representatives’ attendance.

The deadline for submitting an abstract to the 15th International Symposium on MPS and Related Diseases was March 4, 2018. The early-bird discounted symposium registration deadline was May 18, 2018. There is no charge for adults or children with MPS or related diseases to attend the symposium.

The symposium convenes at the Sheraton San Diego Hotel & Marina, 1380 Harbor Island Drive, San Diego, CA 92101, (619) 291-2900. All hotel reservations must be made by July 9, 2018 in order to receive the discounted group rate.

National Niemann-Pick Disease Foundation
26th Annual Family Conference

August 2–5, 2018 in Louisville, Kentucky, USA

The NNPDF’s 26th Annual Family Conference is open for registration. The Conference will convene at the Hyatt Regency Louisville, 320 West Jefferson Street, Louisville, Kentucky. The early-bird discounted Conference registration deadline was June 14, 2018. The late registration deadline is Friday, July 6, 2018. The hotel reservation deadline is July 18, 2018 to get the discounted rate.

A featured speaker will be Dr. Marc Patterson, Professor of Neurology, Pediatrics and Medical Genetics at the Mayo Clinic in Rochester, Minnesota. Dr. Patterson is the Lysosomal Disease Network’s Education Core Director and an LDN principal investigator.

16th International Conference on
Neuronal Ceroid Lipofuscinoses (Batten Disease)

September 12-16, 2018 in London, England, United Kingdom

The 16th International Conference on Neuronal Ceroid Lipofuscinoses (Batten Disease), (“NCL 2018”), which is primarily a scientific meeting, will convene at Royal Holloway, University of London, which is a stunning University conference venue located in Egham, Surrey, close to the M25, M4, and is 7 miles from Heathrow Airport, and a 40-minute train journey from London’s Waterloo Station.

Professor Sara Mole, the Chair of NCL2018, said “This is the only international meeting with a focus on all types and aspects of the neuronal ceroid lipofuscinoses. We are planning an event that will educate and inspire your future endeavours, with participation from experts across all areas — research, clinical, therapeutic development, and particularly for education and family support. Especially welcome are those new to the Batten disease community, with keynote talks setting the scene on the first day and updating us on exciting relevant developments on the following days.”

Abstract submission deadline was May 28, 2018. Conference organizers are hoping that successful sponsorship may enable them to offer a limited number of refunds for travel expenses and conference registration fees. Affected families and other interested persons are encouraged to contact the organizers for more information.

5th Conference on Clinical Research
For Rare Diseases (CCRRD)

October 4, 2018 in Rockville, Maryland, USA

The Rare Diseases Clinical Research Network will convene their 5th Conference on Clinical Research For Rare Diseases (CCRRD) for the benefit of new investigators, trainees, junior faculty, and others interested in rare disease research methodology. Conference attendees are encouraged to submit an abstract. Abstracts are reviewed by the planning committee. The abstracts selected by the planning committee will be invited to be displayed as a poster during the conference. Four trainees with the highest-ranked abstracts will be invited to present their work orally during the meeting. Abstract submission deadline: August 31, 2018. Instructions-to-authors for abstracts and posters are here (scroll down).

The 5th CCRRD will take place at the Hilton Rockville Hotel & Executive Meeting Center. A discounted room rate is available until September 11, 2018. Attendees are responsible for making their own hotel and travel arrangements for the meeting.

Attendees must register for the meeting. Registration Deadline: September 28, 2018. Registration is $100 and includes: meals, refreshment breaks, and meeting materials. Travel awards up to $850 are available on a competitive basis for trainees, fellows, and junior faculty. Candidates must register for the meeting, submit an abstract, and submit their current NIH Biosketch before they can be considered for a travel award. All requests for travel awards are judged by a committee from the Rare Diseases Clinical Research Network. Travel Award recipients will be notified by September 21, 2018. The informative CCRRD flyer would look great on the bulletin boards in your research institution!

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

August 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.


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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