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IFCR CDKL5 family and researcher conference
Alla kundcase

IFCR

A rare disease conference with a near 100% app download rate

The International Foundation for CDKL5 Research ran their family and researcher conference on Ventla for the first time. Almost 100% of attendees downloaded the app.

  • Conference
  • Families & researchers
  • United States

The situation

IFCR brings together families and researchers for a conference built on something harder to plan around than a typical corporate event: people at very different stages of a rare disease journey, in the same room, needing very different things from the schedule.

The organization had used Ventla before. This year, Executive Director Robyn Raphael was running it for the first time, responsible for setting everything up so families and researchers alike could get a seamless experience, not just an agenda in PDF form.

The challenge

A conference like this can't run on one generic schedule. Some sessions overlap. Some information needs to reach everyone; some needs to reach a smaller group without cluttering the rest. And with sponsors in the room, in person, their presence needed to be visible, not just listed in a footer.

Robyn needed:

  • A way to build sessions once and let attendees create their own path through the day
  • Overlapping sessions organized clearly, without confusing people
  • Reminders and updates that reached the right people at the right time
  • Sponsor visibility that felt earned, not bolted on
  • Communication that looked like it came from the organization, not from a piece of software

How they used Ventla

Robyn set up the conference content herself, with her Ventla contact, Jordan, on call for the harder questions, including the ones she didn't know how to ask yet.

Attendees built their own agendas inside the app, pulling everything about a session (time, location, materials) into one place instead of five. Where sessions ran at the same time, tracks kept things organized instead of scattered. Session reminders and updates went out on schedule, automatically.

Sponsor logos were placed directly in the app, so the community could see who was in the room supporting them, which mattered, because every sponsor was there in person.

Email communications sent from the app carried the organization's own domain, so nothing looked like it came from a third party.

The result

Nearly every attendee downloaded the app, driven by the organization promoting it heavily ahead of time in their own emails. Feedback from families and researchers was positive, and Robyn is already planning to use Ventla for the next conference.

"From my first meeting with Jordan, my Ventla representative, I felt like I was in good hands. Jordan is very knowledgeable and the many moments I could not quite articulate some questions or know what I didn't know, Jordan was there to help figure it out."

Robyn Raphael, MPA, Executive Director, IFCR

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