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 or hyperlink on that external web page.

MPS Society of the UK
2019 Annual Conference

June 28-30, 2019

It is time to register for the MPS Society of the UK’s 2019 Annual Conference. This year’s Saturday session offers three separate conferences running in parallel and focusing on:

• CONFERENCE A — Focuses on pediatrics
• CONFERENCE B — Focuses on young people and adults
• CONFERENCE C — Focuses on those with CNS involvement.

Each conference will have a mix of professional and patient talks, as well as panel discussions after each session.

The conference venue is the Doubletree by Hilton Hotel Coventry. If the conference bedrooms at the Doubletree by Hilton Hotel are full, alternative accommodation has been booked with the Holiday Inn, which is located very close to the Doubletree by Hilton Hotel. Early booking is recommended.

Little People of America
62nd Annual National Conference

June 28–July 5, 2019 in San Francisco, California, USA

The 2019 Annual LPA National Conference will convene at the Marriott Marquis Hotel located at 780 Mission Street in San Francisco. 2019 LPA Conference registration and hotel reservations are now available. Attendees must register with LPA first, and obtain a Registration ID number, in order to book their hotel room at the San Francisco Marriott Marquis. As new information becomes available it will be found on the LPA web site.

RARE on the Road

July 13, Sioux Falls, South Dakota, USA

The EveryLife Foundation and Global Genes® co-host this rare disease leadership tour, of which this is the final event. This traveling leadership and educational series helps equip attendees with the knowledge of how to advocate for yourself; to advocate in your local and rare disease community; and to advocate on a legislative level. The events aim to activate the rare disease community at a local level, and empower patients and caregivers with knowledge and insight to better serve their rare community.

The EveryLife Foundation and Global Genes® have been making some limited $150 travel stipends available for each event. The Stipend Application deadline for Sioux Falls, South Dakota is Friday, June 14, 2019.

2019 Batten Disease Support and Research Association
Annual Family Conference

July 18-21, 2019 in Denver, Colorado, USA

Save the date for the BDSRA’s 2019 Annual Family Conference, which will convene at the Renaissance Denver Stapleton Hotel in Denver, Colorado. Registration is now open. There is a limited amount of stipend funding available for families who need assistance to attend the annual BDSRA Conference. Visit www.facebook.com/BDSRAFamilyConference or www.bdsraconference.org for additional conference information.

Conference sponsorships for corporations and non-profit organizations or families are still available! Vendor tables situated in the Conference’s ‘Vendor Area’ are also still available. (The deadline for guaranteed presence in the Conference program and on the Conference tee-shirts has passed, but sponsorships/vendor tables are still available.) Check out the application form download for more details. Questions can be directed to Tracy Kirby at BDSRA.

2019 Hunter’s Hope Annual Family and Medical Symposium

July 24–28, 2019 in Holiday Valley Resort, Ellicottville, New York, USA

Hunter’s Hope, which engages in vigorous leukodystrophy patient advocacy and supports research for leukodystrophy treatment, states that the annual Family and Medical Symposium “is a place where everyone understands and life-long friendships can be formed with other families on a similar path. There is no judgment, only love. For families in attendance, meals and accommodations are paid for by Hunter’s Hope. 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.” The Hunter’s Hope annual Family and Medical Symposium brings together the world’s leading leukodystrophy experts with families affected by these diseases, for a week of learning, sharing and fun.

Registration for the 2019 Family and Medical Symposium closed on May 15th. For further information about the 2019 Family and Medical Symposium, please contact Hunter’s Hope by e-mail at symposium@nullhuntershope.org.

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

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

ISMRD’s 6th Glycoproteinoses International Conference is themed “Translating Scientific Discovery into Therapies.” The ISMRD states, “This conference will once again bring basic scientists, clinicians and families together to share knowledge and inspiration as we continue towards the goal of translating basic science discoveries into therapies for the glycoproteinoses. We strive to highlight the most current advances in research and to discuss openly how these advances can be developed in treatments that will improve the quality of life for patients and families.”

The conference will convene at the Atlanta Marriott Alpharetta. Early bird registration closed April 30, 2019. You can e-mail the ISMRD with questions not addressed by their conference web pages.

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.

The National Fabry Disease Foundation’s
Annual Fabry Family Education Conference

September 5-6, 2019, in Greensboro, North Carolina, USA

The National Fabry Disease Foundation‘s 2019 Fabry Family Education Conference is held just prior to their annual Fabry Family Camp (see below). All individuals with Fabry disease and family members are welcome to attend. Attendees do not have to be attending Fabry Family Camp to attend the Fabry Family Education Conference. The Conference will convene at Embassy Suites by Hilton Greensboro Airport, 204 Centreport Drive, Greensboro, North Carolina, 27409 (situated 10 minutes from Piedmont Triad International Airport, with an airport shuttle).

The Conference’s informal activities are held on Thursday, Sept. 5th, including exhibit tables, research study and survey opportunities, a welcome dinner, and other activities. Educational talks by experienced Fabry physicians and others are provided all day Friday, Sept. 6th. While adults are attending the educational talks, kids and teens are engaged in activities facilitated by a team of contracted nannies and tutors, as well as a chat session facilitated by an awesome team of genetic counselors, nurses and social workers, holding age-appropriate discussions about living with Fabry disease. The groups are divided by age, and by affected or non-affected status. The unaffected sibling chat sessions are equally as important as the chat sessions for affected children. (These chat sessions are reportedly a highlight of the Conference, especially for teens!)

For individuals who need assistance to attend, the National Fabry Disease Foundation (NFDF) may be able to provide airfare, lodging and most meals, depending on available financial resources. There is a multi-step application process to be completed, for those who wish to attend. Phase 1 of the application process has already started. The starting point (application process Phase 1) is the same whether you are a family applying to attend both the Fabry Family Camp and Fabry Family Education Conference; a family or individual applying to attend the Fabry Family Education Conference only; or you are an individual submitting an application to support Fabry Family Camp as one of their awesome volunteers. Don’t delay, contact Jerry Walter at 800-651-9131 or by e-mail: Jerry Walter at The National Fabry Disease Foundation.

The National Fabry Disease Foundation’s
Annual Fabry Family Camp

September 6-8, 2019, at Victory Junction Camp in Randleman, North Carolina, USA

The National Fabry Disease Foundation’s 2019 Fabry Family Camp will convene at Victory Junction Camp. Victory Junction Camp is part of SeriousFun Children’s Network (SFCN), an alliance of 9 camps nationally, and 30 camps worldwide, that serve children dealing with serious medical conditions and chronic illnesses. Victory Junction Camp is certified by SeriousFun, which provides strict guidelines on camper care, financial competency, and program innovations.

Families with children who have Fabry disease between the ages of 6-16 (called primary campers) are invited to attend this awesome expense-free adventure. With at least one primary camper, the entire immediate family (primary campers and their parents and siblings) is eligible to participate. The National Fabry Disease Foundation provides airfare, lodging and meals.

There is a multi-step application process to be completed, for those who wish to attend. Phase 1 of the application process has already started. The starting point (application process Phase 1) is the same whether you are a family applying to attend both the Fabry Family Camp and Fabry Family Education Conference; a family or individual applying to attend the Fabry Family Education Conference only; or you are an individual submitting an application to support Fabry Family Camp as one of their awesome volunteers. Don’t delay, contact Jerry Walter at 800-651-9131 or by e-mail: Jerry Walter at The National Fabry Disease Foundation.

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 is available now. Global Genes® is now accepting online applications for travel awards. Exhibitors can book their booth space now. Contact Global Genes® for answers to your exhibiting questions.

2019 AGSD Patient/Family/Professional Conference

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

Join the Association for Glycogen Storage Disease for their 41st Annual Patient/Family/Professional Conference for those affected with GSD, their families, and medical professionals involved in treatment or research of any type of GSD. 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.

The 2019 AGSD Patient/Family/Professional Conference will convene at the Hilton Houston NASA Clear Lake, and August 30, 2019 is the deadline for the special AGSD Conference room-rate of $109/night + taxes. Conference registration is now active. After August 30th, a late fee of $50.00 will be added to all conference registrations. Hotel reservations are attendees’ responsibility. The hotel parking fee is waived. Please call the Hilton Houston NASA Clear Lake at 1-866-577-1156 to make your reservation. You must identify yourself as part of the “AGSD Annual 2019 Conference” to get their discounted rate by the August 30th deadline.

If traveling by air, Hobby Airport [HOU] is the closest airport to the conference location. There is no free airport-shuttle offered by the hotel.

The AGSD Conference costs include the registration fee and the meal costs for Friday evening dinner and Saturday lunch. The Saturday evening dinner and entertainment is provided free for all conference registrants. The 1-mile Fun Run/Walk will be held at the completion of the Conference on Saturday; Fun Run/Walk registration is now open. The Fun Run/Walk is the main fundraiser for the Association for Glycogen Storage Disease this year, and participants are encouraged to enroll sponsors of their run/walk (pledge sheets are available). For further information about the Fun Run/Walk, please contact Jessica Knepler (or by phone at 815-483-1244).

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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