2021RNDS

October 8 – 10 2021, Virtual Conference

A three-day 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 online conference!

3-day ticket fee: $20*

* 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].

To access the talks:

1. We’ll be using the Hopin.to platform
Please join us by clicking on the “register” button above

2. Click on “Join Event”

3. If you joined us for our 2020 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.

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.

Due to the COVID-19 pandemic, SRNA has made the decision to meet virtually until it is completely safe to meet in person again.

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

This year, three different tracks will be available during the first 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 1 by going to the 2021 RNDS schedule, using the filter option on the right-hand side, and selecting the track you’re interested in.

Please note that 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. All sessions will be recorded and made available within the platform and on our website.

The focus of the second day of the RNDS is focused on learning about strategies and solutions to manage the ongoing symptoms associated with ADEM, AFM, MOGAD, NMOSD, ON, and TM and management of care.

During the third day, we will focus on learning about current and future research on therapeutics and understanding more about the biology of ADEM, AFM, MOGAD, NMOSD, ON, and TM.

You can find a detailed agenda on our Hopin event page.

© 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 NMO Clinic at Massachusetts General Hospital take responsibility for the content of this education activity. This schedule is subject to change.

Code of Conduct

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 about how best to provide accessibility for you throughout the 2021 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 2021 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 2021 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 2021 RNDS, SRNA staff will be available in the Hopin chat for general help & questions, as well as virtual guidance and troubleshooting.

(Note: The word ‘virtual’ describing 2021 RNDS does not mean you must be tech-savvy to attend!)

Additionally, SRNA Staff, as well as speakers, will be clearly identifiable via their virtual profiles.

Other Needs?

The 2021 RNDS as a virtual 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.

Exhibitors

Be a 2021 RNDS Exhibitor

As an exhibitor, you will have a dedicated booth at the Expo Area— the exhibitor hall of digital exhibitor booths at the 2021 RNDS. Attendees can visit the Expo Area and learn about your organization. Your dedicated booth can contain a live video, branded content, Twitter links, pre-recorded videos, special offers, salespeople on live camera, and a customized call-to-action (CTA) button.

As a featured exhibitor, in addition to all the benefits listed in the exhibitor sponsorship, you will have the opportunity to present live or stream a pre-recorded video on the main stage area of our virtual conference.

Any non-profit patient advocacy groups interested in having a booth at the RNDS should contact GG deFiebre at [email protected].