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.

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. The final deadline for a discount on the registration cost is July 31, 2019. 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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