Thank you for your interest in the 2021 RARE Patient Advocacy Summit. Below you will find answers to most of your questions. If you do not find an answer to your question, please do not hesitate to reach out to us at [email protected]

A more detailed virtual event guide will be emailed to you prior to the event – this will include helpful information on how to access/navigate the virtual event platform



What are the conference dates?

The 2021 RARE Patient Advocacy Virtual Summit  will take place on September 27-29, 2021. You can view the event page here.

What is the format of the event?

This 3-day event will provide members of the rare disease community, stakeholders, and allies with opportunities to connect and engage with each other through a variety of interactive and educational events, meet-ups, workshops and networking opportunities. Please click here for a more detailed agenda.

What type of content and sessions can I expect to see?

The 2021 RARE Patient Advocacy Summit will include content focused in three key areas – living as a rare patient and patient support, tactical building blocks for advocacy teams and leadership skills labs on advanced organizational and strategy topics. There will also be featured plenary and keynote sessions highlighting stories from patients and community members, innovations in rare disease research, and more. At the end of each day, “Office Hours” and networking sessions will provide an opportunity to connect with speakers, peers and ensure that you find answers to your most pressing questions. This event is designed to provide key capacity building knowledge and insights for patients, advocates and caregivers to help support your work and accelerate change for rare disease patients globally. 

What virtual platforms will the event be utilizing?

The event will take place on Digitell which utilizes Zoom as its broadcasting tool. More information on how to access the event platform will be provided closer to the event.

What is included in registration?

Included in your registration is access to all 2021 RARE Patient Advocacy Summit sessions. Please note as part of your registration you have access to all sessions other than freshman orientation. Should you want to attend freshman orientation, please add the session during the registration process. 

What equipment will I need to participate virtually?

You will need an internet connection and a computer, tablet or smartphone. Sessions are best viewed on Google Chrome and Mozilla Firefox.

How do I register for sessions?

All sessions will be included in your registration with the exception of freshman orientation which you may select at no additional cost.

Are sessions live or recorded?

Sessions will be hosted live and provide opportunities for brief Q&A sessions throughout.

What if I miss a live session?

Recordings will be available on the virtual event platform within 48 hours after the session. Recordings will also be made available on the Global Genes website within one month after the event. 

Will speaker slides be available?

Slides will be made available as long as approved by speakers – all slides will be uploaded as pdfs on the virtual platform as soon as a final version is received, typically within 10 business days.

Am I able to ask a speaker or presenter questions?

There will be a digital Q&A box available in each session where you can type any questions you have as they come up.

What if my question is not answered during the live session? 

If your question is not answered live, you will receive a response and answer to your question within 48 hours from either the speaker or a Global Genes staff member. 

How do I access the event after registering?

The final event access link will be sent the week of  September 20th. Please be sure to monitor your email for the correct link.



How do I register?

You can register for the 2021 RARE Patient Advocacy Virtual Summit here.

What is the cost to attend/How much is the registration fee? *

  • Patient: $35
  • Patient Advocate: $35
  • Caregiver: $35
  • Academia: $75
  • Scientist/Researcher (non-industry): $75
  • Healthcare Professional (non-industry): $75
  • Corporate/Industry: $500
  • Government: $75
  • Media: please contact [email protected] for more information and partnership opportunities. 

*If you are a Foundation Alliance member, please use the discount code provided to you via email.

*If you are a Corporate Alliance member, please use the discount code provided to you via email.

How do I modify my registration?

  1. Go to this link.
  2. Click on “Already Registered?” on the top right corner.
  3. Enter your email you used to register and your confirmation number found in your registration confirmation email and then click OK.
  4. Click on the “Modify Registration” button.

I lost my registration confirmation email.  How can I have my registration confirmation resent to me?

Please email us your request at [email protected].

What is the registration cancellation policy?

There will be no refunds issued. If you would like to cancel your registration, please send us an email [email protected].

Can I transfer my registration if I can no longer attend? 

Yes, you can transfer your registration. To transfer your registration:

  1. Go to this link.
  2. Click on “Already Registered?” on the top right corner.
  3. Enter your email you used to register and your confirmation number found in your registration confirmation email and then click OK.
  4. Click on the “Transfer Registration” button.

How do I register as a speaker?

Speakers will receive instructions once they are confirmed with registration information. Speakers receive a full conference pass for their contribution to the 2021 RARE Patient Advocacy Summit. 

Is there a Global Genes Swag Bag? 

You can choose to purchase our summit swag bag during the registration process. You will need to select the option, submit your mailing address, and pay $15 for shipping.

What is included in the swag bag? 

Items included will be announced soon.

Why is there a charge for the swag bag? 

The $15 is to cover the costs of shipping and other fees associated with producing and shipping the swag bag. 

Can you ship the swag bag outside of the United States? 

Unfortunately at this time, we are unable to ship outside of the United States.

I ordered a swag bag and haven’t received it yet. When can I expect to receive it?

Swag bags are expected to be shipped the week of the meeting. You will receive an email with tracking information once your bag has been shipped.


Sponsorship Information

Who can I contact for information about sponsorship opportunities for this event?

For information about sponsorship opportunities, please contact Kathy O’Connor at [email protected]..  If you are already a sponsor and have any questions about this new virtual event, please feel free to reach out to Kathy as well for more details. Thank you for your support! 

What sponsorship opportunities are available? 

Please view our event prospectus for sponsorship opportunities. 



Will there be a mobile app?

No, however, the virtual meeting can be accessed from your mobile device via the web browser . 

Will there be a freshman orientation?

Yes, Monday, September 27th 4:00pm – 5:30pm ET. 

What is your privacy policy?

Please review our terms and conditions here

Are you offering continuing education units (CEU)? 


Are you accepting poster abstracts? 

Yes, please visit this link for more information. 

I’m having trouble registering.

Here are a couple of solutions you can try to help fix this issue:

  • Please try deleting your cookies on your web browser and refresh the page.
  • Please try using a different web browser. (Registration typically loads the best on a desktop on Google Chrome or Mozilla Firefox.)

If you are having trouble accessing your registration confirmation after registering, please email us at [email protected]

Will there be closed captioning for the event?

There will be closed captioning for all sessions.