Glut1 Deficiency Foundation

Research Ready Series

Miami

The Glut1 Deficiency Foundation is pleased to offer the Research Ready Series, a special project to build a strong, patient-centered research foundation and increase research literacy in our community.

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goals of the series

  • educate the community on the importance of patient-centered outcomes research
  • increase research literacy and clinical trial readiness
  • help ensure research is focused on the needs and priorities of patients
  • strengthen relationships and form new partnerships and collaborations across all stakeholders

event details

Saturday, October 19, 2024

location

Hilton DoubleTree Doral
10250 NW 19th Street
Doral, Florida  33172

A room block has been reserved with a discounted rate of $159 nightly plus taxes.

  • refrigerators in each guest room
  • free parking
  • outdoor pool
  • free area shuttle
  • hotel discounts are available from October 16th to October 23rd
  • hotel discounts end on September 19th or until rooms sell out
  • registration closes October 1st!

Follow the link below to make reservations:
Group Rate Room Discount Reservations

agenda

Saturday, October 19, 2024:

Agenda at a Glance (more details to come):

  • morning:  expert presentations and research updates
  • lunch
  • afternoon:  research fundamentals training
  • social time

registration

  • Registration is free for Glut1 Deficiency patients.
  • The registration fee is $25 per person for all others participants.
  • Participants interested in stipends may apply during the registration process.
  • Scholarship applications are available to cover registration fees when registration costs create a financial hardship.
  • Registration closes October 1st!

stipends

A limited number of stipends are available, but participation will be open to as many who would like join from any of our stakeholder groups - patients, caregivers, clinicians, researchers, and industry partners - and a stipend is not necessary to take part.

Participation Stipends:  $100 for successful completion of either in-person or virtual research fundamentals training
Travel Stipends:  $400 for in-person participants requiring travel and hotel accommodations in order to participate

  • An individual may receive both a participation and a travel stipend, but only one individual per family is eligible for a travel stipend.
  • Travel stipends require staying at the DoubleTree as part of the discount room block.
  • Stipends will be paid upon the successful completion of the training and all related activities (pre-test, post-test, and survey).
  • Participants may apply for stipends as part of the registration process.
  • Stipends will be awarded based on order of registration/application.
  • Participants will be notified of stipend status once they have been allocated and awarded.
  • A waiting list will be used as needed in case anyone awarded stipends will not be able to complete the training.
  • Individuals from any location are eligible.
  • Stipends will be paid via check or PayPal.

child care

  • Child care will be provided at no additional cost to participants.
  • All children participating must be registered in advance as part of the general registration process.
  • Games, activities, and arts and crafts will be provided.
  • Age groups:  0 to 3 years; 4 to 12 years; 13 years and up
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This project is partially funded through a Patient- Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (#28926).

The Patient-Centered Outcomes Research Institute® (PCORI®) is an independent, nonprofit organization authorized by federal law in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.

The Glut1 Deficiency Foundation is grateful for this opportunity and for the support from PCORI for this project.