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.

Association for Glycogen Storage Disease
2018 Patient/Family/Medical Conference

September 21-22, 2018 in Davenport, Iowa, USA

The 2018 AGSD Conference is convening at the Radisson Quad City Plaza, 111 East 2nd Street, Davenport, Iowa. The AGSD Conference is an annual meeting where those affected with glycogen storage diseases, their families, and medical professionals can connect with others to provide mutual support. The focus of the 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. Details regarding registration and hotel accommodations are available.

2018 RARE Patient Advocacy Summit
Hosted and Organized by Global Genes

October 3-4, 2018 at the Hotel Irvine in Irvine, California, USA

The 2018 RARE Patient Advocacy Summit, organized and hosted by Global Genes, offers many unique opportunities to support the rare community by participating in the largest educational event for rare patients and advocates. Each year Summit brings together rare disease patients, caregivers, advocates, scientists and academics, industry thought leaders, and medical professionals to learn, network, and collaborate. It will feature specialized learning tracks that include topics dedicated to these four areas of interest:

• Living with a life-altering condition, before and after diagnosis
• Becoming successful architects of your health and that of your disease community
• Building on advances as a patient, partner, and driver in drug development
• Learning about the latest science and technology that drive innovation.

Join Global Genes, partners and rare disease community members from all walks of life to become equipped with the tools needed to persevere and thrive on your path forward!

Can’t attend the Summit in person? Don’t worry, you can view the event on Livestream! Are you interested in helping to sponsor the Summit, or would like more information about possible sponsorship? Please contact Kathy O’Connor or Seth Fritts.

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

November 19, 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, which will be 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: October 22, 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. Use the hotel’s group-booking codes (scroll down) when making your hotel reservation.

Attendees must register for the meeting. Registration Deadline: November 12, 2018. Registration is $100 and includes: meals, refreshment breaks, and meeting materials. Travel awards up to $750 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 November 5, 2018. The informative CCRRD flyer would look great on the bulletin boards in your research institution!

The Everylife Foundation presents
A Rare Affair 2019

January 6, 2019 in San Francisco, California, USA

Attend A Rare Affair 2019 to join biotech and finance executives and venture capitalists at the annual JP Morgan Healthcare Conference for a spectacular networking and wine-tasting event. Proceeds from A Rare Affair benefit the EveryLife Foundation for Rare Diseases. A Rare Affair is held at Kimpton’s Sir Francis Drake Hotel in Union Square on January 6, 2019 from 6:30 p.m. – 10:00 p.m. Guests will enjoy unique, small-batch wines as well as delicious hors d’oeuvres and the hosted open bar. Individual tickets are on sale for $350.00. On January 1, 2019, tickets will be $400.00. (The EveryLife Foundation is a 501(c)3 public charity. All contributions to the Foundation are tax-deductible to the extent permitted by law.) Sponsorships for guaranteed seating are also available now. Individual tickets for A Rare Affair 2019 will become available on October 1, 2018.

15th Annual WORLDSymposium

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

Registration for the 15th Annual WORLDSymposium is open. The early-bird registration discount ends January 4, 2019. WORLDSymposium™ 2019 will convene at Hyatt Regency Orlando, 9801 International Drive, Orlando, Florida, 32819. A limited block of discounted hotel rooms is available until January 4, 2019 or until the discounted room block fills, whichever occurs first.

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

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. Save the date — details are forthcoming, keep checking their web page for updates.

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.


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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