2022RNDS
October 7 – 9 2022, Hybrid Conference
A three-day hybrid (in-person and online) educational event for those with acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM), as well as their families, care partners, and medical professionals.
Hosted by
Registration
Join us for a three-day hybrid conference!
Ticket fees*
Hybrid Ticket (in-person and online)
- SRNA Member: $70 ($50 Early Bird ticket until 7/31)
- Non-Member: $90 ($70 Early Bird ticket until 7/31)
Compliance with COVID-19 safety protocols for all in-person event participants will be mandatory. Anyone attending the RNDS in-person must provide evidence of up-to-date COVID vaccination (as defined by CDC guidelines). More information on SRNA’s COVID-19 Guidelines can be found here.
Online Ticket Only
- SRNA Member: $25 ($20 Early Bird ticket until 7/31. Use EARLYBIRD promo code at checkout)
- Non-Member: $35 ($28 Early Bird ticket until 7/31. Use EARLYBIRD promo code at checkout)
Not a member? Become a member for free here.
* We are committed to making our educational programs accessible to everyone. If you can’t afford the registration fee, please contact us at [email protected].
About
The RNDS was created to bring together individuals diagnosed with rare neuroimmune disorders and clinicians and researchers that focus on these disorders. This event is the only one of its kind.
On October 7 – 9, 2022, we will host a hybrid event—participants can choose to attend either in-person, virtually via online streaming, or partly in-person and partly online. An online pre-RNDS will be hosted on September 9, 2022, to dive deeper into topics related to your rare neuroimmune disorder and start meeting others that will attend the RNDS in October.
We remain committed to hosting a conference that empowers our rare disease community to become better advocates for themselves and provides valuable resources to keep learning about these rare conditions.
Supported in part through education grants by
* The Executive Committee of SRNA with the medical and scientific council determines the content and topics of the event. Supporters are not able to influence the education program.
Schedule
You can find a detailed agenda here (pdf) or on our Hopin event page.
This year, three different tracks will be available during part of the second day of the symposium:
- Track 1: The educational content in this track is intended to be most helpful to members of our community who have been diagnosed within the last two years with a rare neuroimmune disorder — ADEM, AFM, MOGAD, NMOSD, ON, and TM.
- Track 2: The educational content in this track is intended to be most helpful to members of our community who were diagnosed more than two years ago with a rare neuroimmune disorder — ADEM, AFM, MOGAD, NMOSD, ON, and TM.
- Track 3: The educational content in this track is intended to be most helpful to parents and pediatric members of our community who were diagnosed with a rare neuroimmune disorder — ADEM, AFM, MOGAD, NMOSD, ON, and TM.
You can view the different tracks for Day 2 by going to the 2022 RNDS schedule, using the filter option on the right-hand side, and selecting the track you’re interested in.
We welcome attendance at any of the talks that are interesting to our audience, even if not in a specific track. You are not restricted to talks in only one track unless they overlap times. Please note that we will only be able to stream Track 1 for those who will be attending virtually. There will also be a special Q&A session available for the online track during this time. All sessions will be recorded and made available within the platform and on our website.
© The Siegel Rare Neuroimmune Association, The University of Texas Southwestern and Children’s Medical Center CONQUER Program, and The Johns Hopkins Myelitis and Myelopathy Center, and The Neuroimmunology Clinic and Research Laboratory at Massachusetts General Hospital take responsibility for the content of this education activity. This schedule is subject to change.
Venue
The 2022 RNDS will be held at the Hilton Los Angeles Airport.
Hilton Los Angeles Airport
5711 West Century Boulevard Los Angeles
CA 90045
To make a reservation for a hotel room, please book online by clicking here. Guests will need to provide a credit card to guarantee their reservation and can cancel up to 24 hours before arrival.
Accessible (with and without roll-in showers) and non-accessible rooms are available at a rate of $139/night. You can also call the hotel directly at (310) 410-4000 and ask for the room rate for “RNDS – SRNA Symposium.”
Hotel and Private Parking Shuttles at LAX
Shuttle stops for both hotels are located on the Upper/Departures Level of LAX terminals identified by RED curbside pylons.
Hilton LAX Shuttle runs 24 hours per day, every 20 minutes to all terminals automatically so no reservations are needed. Shuttles are wheelchair accessible.
To return to LAX, wait at the Hilton LAX front drive and shuttles arrive automatically every 20 minutes. Allow 20 minutes to arrive to LAX due to heavy traffic conditions.
Online Platform
To access the online talks:
1. We’ll be using the Hopin.to platform
Please join us by clicking on the “register for online event only” button above. Important Note: if you are registering for the Hybrid event (both in person and online), you will receive a special link in the confirmation email to access the online platform).
2. Click on “Join Event”
3. If you joined us for our 2021 RNDS last year, you can sign in with your existing Hopin account. If this is your first time, please create a new account
3. Set up your profile
We recommend:
- Troubleshooting your internet before joining the conference to help prevent lag. We will be recording and if you are having trouble, you can access it at a later time.
- Using the same profile image & personal description when creating your Hopin profile for people to easily recognize you. Be sure to add information in your bios like whether you are a person affected by a rare neuroimmune disorder, a caregiver, or a medical professional. This will let others know a little bit about you when connecting.
- Checking out the posted schedule in Hopin and adding to your personal calendar so you do not miss any talks.
- Keeping a handy headphone set in case you have the opportunity to network/connect within Hopin.
- Placing a light in front of you or switching on the lights above so people can clearly see you in video calls.
- Staying connected to a power source so your computer does not lose power.
Code of Conduct for online RNDS
Connecting and interacting virtually poses many different considerations, which is why we have put together a code of conduct to help attendees navigate this year’s event.
Leave space for true dialogue.
Allow time and space for everyone to share their thoughts during sessions or other small groups. While pauses in conversation can feel uncomfortable or unnatural for some, leaving space allows second-language speakers as well as introvert/introspective personalities to gather their thoughts.
Mute except when speaking.
When speaking, please use video if your connection allows as non-verbal communication can aid in inclusive communication between individuals.
Network respectfully and support others.
The Hopin platform limits networking conversations to approximately three (3) minutes. If during networking, individuals would like to continue the conversation beyond these 3 minutes, Hopin provides private chat functionality for each individual to provide personal contact information within their profile for alternative follow up communication.
Harassment will not be tolerated.
Harassment includes offensive verbal or written comments related to race, religion, gender, gender identity, disability, body size, physical appearance, national origin, or sexual orientation, intimidation, stalking or unwelcome sexual attention.
If you are being harassed or notice someone being harassed, please contact a member of the conference staff immediately by emailing [email protected].
Conference or SRNA staff will tell the offender to stop the defined harassing behavior. If the behavior continues, the offender will be expelled from the conference. The SRNA reserves the right to exclude the offender from future SRNA events.
Be mindful of differences.
Everyone does their best work when they can be themselves in an environment that fosters diversity, inclusion and respect. SRNA is committed to creating and maintaining a welcoming and respectful working environment where every person regardless of background or individual experience can truly thrive and contribute.
Accessibility
Please email [email protected] as soon as possible so that we can collaborate on how best to provide accessibility for you throughout the 2022 RNDS.
Please take this time to fuel yourself mentally and physically.
Worried about missing out on the content? We’ll be recording as much of the 2022 RNDS talks as possible to share via our YouTube account over the coming weeks and months. During the conference, be sure to take breaks in order to care for yourself. Remove your headphones, do a few stretches and a few breathing exercises to get your body and mind moving and stimulated.
Blind and Visually Impaired.
Our schedule is available in large print on the 2022 RNDS website as well as via PDF for physical printing/enlargement. Your feedback is incredibly valuable if you have any comments or suggestions.
General Help.
Throughout the 2022 RNDS, SRNA staff will be available in the Hopin chat for general help & questions, as well as virtual guidance and troubleshooting.
Additionally, SRNA Staff, as well as speakers, will be clearly identifiable via their virtual profiles.
Other Needs?
The 2022 RNDS as a hybrid conference is a new format but making SRNA’s events more accessible and meaningful is an active, ongoing process. We welcome your suggestions and ideas and would like to learn from your experiences. Please contact us at [email protected]
* These guidelines have been modeled in part or in whole from MOZFEST. SRNA, a 501c3 nonprofit that advocates for those affected by rare neuroimmune disorders, is continually striving to improve the means by which we include and provide access to all individuals.
Become an Exhibitor
Be a 2022 RNDS Exhibitor
As an exhibitor, you will have a dedicated booth at the Expo both on-site as virtually. Attendees can visit the Expo Area and learn about your organization.
Learn more about our exhibitor levels and become an exhibitor below.
COVID-19 Guidelines
During the hybrid (in-person and online) RNDS, compliance with COVID-19 safety protocols for all in-person event participants will be mandatory. Anyone attending the RNDS in-person must provide evidence of up-to-date COVID vaccination (as defined by CDC guidelines). More information on SRNA’s COVID-19 Guidelines can be found here.
