2020RNDS

August 29 2020, Virtual Conference

A one-day educational conference, hosted by the Siegel Rare Neuroimmune Association and the University of Utah Health, for those affected by rare neuroimmune disorders — Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), and Transverse Myelitis (TM).

Registration

Join us as we take the 2020 Virtual RNDS online for the very first time! We have also decided to make the conference this year free to attend.

Breakout Sessions, held in the afternoon (MT), require a separate registration

  • Registration for all sessions is free.
  • There are two breakout session rounds (at 2:00 PM, and 2:45 PM MT). You can view all sessions here.
  • Sessions are limited to 20 participants per session to allow conversations to flow easily.
  • Sessions are meant to be interactive — you are encouraged to share audio and video and actively engage with the other attendees and facilitators. We are reminding session facilitators that not everyone will want to read out loud/share their notes and that this will not be required from any participants.
  • Please be mindful that you are taking up a valuable spot. If you aren’t sure you can attend, please don’t register.
  • If you are sure you can attend, register as soon as possible, as spots fill up quickly!

Register for your sessions here.

To access the talks:

1. We’ll be using the Hopin.to platform.
Click on the link below to “join” the 2020 Virtual RNDS
(We recommend using Chrome or Firefox).

2. Sign up for an account

3. Set up your profile

✍️ If you registered for a session, you will receive a separate email with details on how to participate.

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.

In light of the COVID-19 pandemic, SRNA has made the difficult but necessary decision to cancel the in-person event in August and proceed with a virtual format.

Though it will be different, we are nonetheless excited about the unique opportunities this new approach affords us. 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.

Sponsors

* The Executive Committee of SRNA with the medical and scientific council determines the content and topics of the event. Sponsors are not able to influence the education program.

Schedule

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

Breakout Sessions

Imaging in Rare Neuroimmune Disorders

The goal is to review the role of imaging in the diagnosis of neuroimmunologic disorders and their mimics.

Stress Management and Coping

During this session will review skills to manage stress and uncertainty during the pandemic including self-care, eliciting the relaxation response, and self-compassion.

Novel therapeutic strategies in NMOSD

The goal of this session is to meet with representatives of pharmaceutical companies who are invested in the NMOSD community and share experiences, ask questions, and learn from each other.

IEPs and 504s: How to Advocate for Your Child in School

Please join us for a description of how to advocate for academic supports. We will discuss a variety of school-based accommodations and interventions including 504 Plan and Individualized Education Program (IEP) that might help set the stage for your child to be more successful in school.

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 info@wearesrna.org.

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 info@wearesrna.org as soon as possible so that we can collaborate about how best to provide accessibility for you throughout the 2020 Virtual 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 2020 Virtual 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 2020 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 2020 Virtual 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 2020 Virtual RNDS does not mean you must be tech-savvy to attend!)

Additionally, SRNA Staff, as well as the faculty of the University of Utah, will be clearly identifiable via their virtual profiles.

Other Needs?

The 2020 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 info@wearesrna.org

* 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 2020 RNDS Exhibitor

As an exhibitor, you will have a dedicated booth at the Expo Area— the exhibitor hall of digital exhibitor booths at the 2020 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.

Any non-profit patient advocacy groups interested in having a booth at the RNDS should contact GG deFiebre at gdefiebre@wearesrna.org.