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.

Batten Disease Support and
Research Association
2017 Family Conference

July 6-9, 2017, in Pittsburgh, Pennsylvania, USA

The 2017 BDSRA Family Conference will be at The Wyndham Grand Pittsburgh Downtown hotel. This year is the BDSRA’s 30th anniversary, and they would love to see old photos and hear stories that past attendees may have. Please e-mail for more information about sharing the amazing past of the BDSRA! Visit their Facebook page for ongoing updates.

The MPS Society (UK)
MPS Weekend Conference 2017

July 7-9, 2017 in the Doubletree by Hilton Hotel Coventry, Coventry, UK

This unique conference is dedicated to sharing the most up-to-date information available on the clinical management and treatment of MPS diseases, Fabry disease and related diseases, as well as clinical trials and research. This conference is open to all those living with or affected by MPS diseases, Fabry disease or related diseases, as well as health care, social care and educational professionals. This is an unmissable UK event for those personally or professionally involved in caring for a child or adult with MPS, Fabry or a related disease.

The Saturday and Sunday programs offer three separate conferences running in parallel and focusing on:
• Conference A: MPS I; MPS II (not progressive CNS); MPS IVA; MPS VI; LAL D (late onset); ML III and Mannosidosis
• Conference B: MPS II (progressive CNS); MPS IIIA, MPS IIIB, MPS IIIC, MPS IIID; LAL D (infantile); and rare related diseases
• Conference C: Fabry disease

To learn much more, download the conference brochure/reservation form: MPS Society UK – July Conference Brochure or telephone 0345 389 9901. In addition to the complete agendas for all three parallel conferences, this brochure also provides in-depth information about the MPS Society’s extensive childcare program at this weekend conference for all children under 18 years old, as they are not permitted into the conference. Vulnerable young adults are also welcome to participate in this very special social childcare program packed full of fun and stimulating activities and outings. The Society hopes this will allow parents and caregivers to attend the conference in a relaxed manner, knowing that their children are safely cared for and well entertained.

The conference registration deadline was Friday, May 19, 2017. On June 16, 2017, however, the Society sent out an e-mail that stated they were still taking registrations for the conference, that it was not too late to register. They directed interested persons to a new webpage on their site. The LDN suggests phoning the Society to ascertain the current status of new registration, at 0345 389 9901. Additionally, the MPS Society’s Upcoming Events & Clinics web page always provides a wealth of information about all of the Society’s upcoming events!

The Cystinosis Research Network
2017 Family Conference

July 13-15, 2017 at the Snowbird Ski and Summer Resort, Snowbird, Utah, USA

The Cystinosis Research Network invites you to join them and learn about the latest updates in cystinosis research through lectures, workshops, poster sessions, and medical and patient panels. There will also be opportunities to socialize with other patients and families which will provide valuable connections and friendships that can last a lifetime. Registration and in-depth Conference information is found on the Cystinosis Research Network web site. Registration fees were $50 per individual/household before June 1st and are $75 per individual/household after June 1st.

Hunter’s Hope Foundation
20th Annual Family & Medical Symposium

July 17-23, 2017 at Holiday Valley Resort in Ellicottville, New York, USA

The Hunter’s Hope 20th Annual Family & Medical Symposium brings together the world’s leading leukodystrophy experts with families affected by these diseases for a week of learning, sharing and fun. For families in attendance, meals and accommodations are paid for by Hunter’s Hope Foundation. Travel arrangements to and from the event are the responsibility of the family, but travel assistance is available for qualified families unable to cover these expenses. For more information about this, or other questions regarding the Family & Medical Symposium, please contact their Family Programs Director, Kathleen Scott.

The National MPS Society (U.S.)
Annual Family Conference

August 3-5, 2017, in Minneapolis, Minnesota, USA

The National MPS Society of the USA will convene its annual Family Conference at the Hilton Minneapolis, 1001 Marquette Avenue South, Minneapolis, Minnesota, 55403, (612) 376-1000. Hotel and Conference reservation deadlines are June 29th, 2017. For extensive in-depth details about the 2017 Family Conference in Minneapolis, be sure to visit the Conference’s outstanding web site which features 8 tabs at the top, each one jam-packed with Conference information.

On Saturday August 5 the Society will host the “Minneapolis Madness for MPS” chip-timed 5K Run & 1 mile Memorial Walk on the beautiful University of Minnesota campus. Included are awards in various male/female categories. Interested would-be participants are encouraged to register online, build a team, and fundraise online! Don’t want to build a team? You can join a team or participate as an individual as well! Don’t want to participate in those “registered” ways? Volunteer to help run this event, and/or clean up after its conclusion. Event registration fees are $20 early-bird individual for 5K run registration; $60 early-bird family of four for 5K run registration; $10 registration for 1 mile memorial walk; $25 day-of-event for 5K individual registration; and $80 day-of-event family of four for 5K registration. After the race, enjoy the bonhomie over lunch ($10 lunch, per person, either paid in advance or on the day of the event). After visiting all of the excellent online information, questions can be directed to Race Director Terri Klein.

13th International Congress of
Inborn Errors of Metabolism

September 5-8, 2017, in Rio de Janeiro, Brazil

Registration is open for the 13th International Congress of Inborn Errors of Metabolism. You may e-mail your questions to for more information.

Global Genes
RARE Patient Advocacy Summit 2017

September 14-15, 2017, in Irvine, California, USA

The 6th annual RARE Patient Advocacy Summit will convene at Hotel Irvine, 17900 Jamboree Road, Irvine, California, 92614. Global Genes is accepting travel scholarship applications for attendance at the RARE Patient Advocacy Summit 2017 through July 1st, 2017. Travel scholarships can be up to $600 for patients or family advocates in the rare disease community, and/or staff (paid or volunteer) of rare disease non-profit organizations or support groups. Registration is open!

5th Glycoproteinoses
International Conference
Hosted and Organized by the ISMRD

November 1-4, 2017 in Rome, Italy

Dr. Alessandra d’Azzo is the primary investigator for this scientific conference to be held in Rome, Italy. Dr. d’Azzo wrote, “Like earlier ISMRD gatherings, the conference will bring together basic scientists and clinicians from around the world to share with patient families and colleagues their latest discoveries in the areas of glycoproteinoses pathophysiology, investigational and pre-clinical therapy development, and clinical trials for these rare disorders.” Explore more information: about the conference venue; to make the hotel reservation; or to register & pay the fees. Children and adults diagnosed with a glycoprotein storage disease are admitted free of charge. Early-bird registration ends August 30, 2017. An outstanding lineup of international physicians and researchers comprise the scientific committee. The organizing committee is also quite impressive. More information will be posted at the conference’s web site as the conference draws closer.

15th International Symposium on MPS
and Related Diseases

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

This 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. Save the dates! Meeting details are not yet released. Check the web site periodically.

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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