Events

RARE Advocacy Summit Advocate Support

Advocate Support is available to individual patients, close family and friends of advocates in the rare disease community, or staff (paid/volunteer) of rare disease nonprofit organizations or support groups.  

Apply to the Advocate Support Program

The Advocate Support Program is offered to offset the cost associated with attending the 2023 RARE Advocacy Summit. Advocate Support will cover a portion of your meeting and travel expenses for the conference.

Important Dates to Remember

May 31: Advocate Support application opens

June 26: Advocate Support application closes at 12pm ET (noon)

July 17: All status notifications will be emailed

August 11: Hotel room block closes

September 19-21: RARE Advocacy Summit

September 19: The reimbursement process begins upon check-in at the event registration desk. Once check-in is confirmed, Global Genes will begin electronically disbursing funds to awardees. Please note that it may take up to 30 days after the event to receive a reimbursement from Global Genes.

All dates are tentative and subject to change

FREQUENTLY ASKED QUESTIONS

Who is eligible to apply?

  • Advocate Support is available to individual patients, close family and friends of advocates in the rare disease community, or staff (paid/volunteer) of rare disease nonprofit organizations or support groups.  
  • Domestic and international individuals are eligible to receive Advocate Support. 

Who is not eligible to apply?

  • You are not eligible to receive Advocate Support if you are in academia, Corporate/Industry, Government, Healthcare Professional (non-industry), Media, Scientist/Researcher (non-industry), or Medical Student. 
  • Event speakers are not eligible to receive Advocate Support and should speak with their Global Genes representative regarding information related to registration, travel, and accommodation. 

Can I be awarded an Advocate Support for both the 2023 Health Equity Forum and the 2023 RARE Advocacy Summit?

  • You are not eligible to receive both the 2023 Health Equity Forum Advocate Support and the 2023 RARE Advocacy Summit Advocate Support. However, you are eligible to apply for both the 2023 Health Equity Forum Advocate Support and the 2023 RARE Advocacy Summit Advocate Support. Global Genes will prioritize those who have not been awarded an Advocate Support for a previous or upcoming Global Genes event.

How many Advocate Support recipients is my household or organization eligible to receive?

  • Global Genes will offer one (1) Advocate Support per household or one (1) Advocate Support per organization. If multiple individuals from one household or organization apply, Global Genes will determine who will be awarded the Advocate Support on behalf of that household or organization.  

If I was awarded Advocate Support before (Previously Patient Advocate Stipend), can I apply again?

  • If you were awarded Advocate Support (Previously Patient Advocate Stipend) to a previous RARE Advocacy Summit (Previously Patient Advocacy Summit) or any previous Global Genes conference, you are still eligible to apply and receive this Advocate Support. However, Global Genes will prioritize those who have not been awarded Support (previously named Patient Advocate Stipends) for a previous Global Genes event.

Can I apply for Advocate Support if I plan to attend virtually?

Advocate Supports is only available to individuals who will attend the conference in person

How do I apply for Advocate Support?

Apply to the Advocate Support Program HERE. Applications are due by Monday, June 26th at noon 12:00 pm EST. 

How much money is awarded for Advocate Support?

  • Your geographic location determines the amount you are eligible to receive.
    • Domestic attendees are eligible to receive up to $750 (USD) for Advocate Support.
    • International attendees are eligible to receive up to $1,500 (USD) for Advocate Support.

What will the Advocate Support Cover?

Advocate Support can be used to cover the costs of event registration, travel, and lodging. Any costs outside of what the Advocate Support covers are the responsibility of the individual. Additionally, anything above the Advocate Support amount is the responsibility of the individual.

Booking travel/lodging and registering for the conference is the responsibility of the individual attendee.

How many Advocate Support Recipients will be awarded for the 2023 RARE Advocacy Summit? 

Global Genes is offering a limited number of Advocate Support awards. Given this, please ensure you submit your application as early as possible. 

How will my application be evaluated?

All Advocate Support applications will be evaluated using the criteria below. Additionally, all applications will be reviewed by an internal (Global Genes Staff) team of reviewers. 

Review Criteria: 

  • Previous Patient Advocate Stipend Award. Has the applicant received a Patient Advocate Stipend for a 2022 and/or 2023 Global Genes event? (Note: Priority will be given to applicants who have not yet received Support in 2022 or 2023). 
  • Advocacy Work in the Community. How well does the applicant describe their work in the rare disease community? Is this work relevant to the content being covered at the 2023 RARE Advocacy Summit? 
  • Financial Need. How clearly does the applicant outline their financial need? Do the costs described seem accurate and honest?  
  • Impact on Applicant/Rare Disease Community. What impact will attendance at the 2023 RARE Advocacy Summit have on the attendee or the attendee’s disease community? How does the attendee intend to apply their learnings from the event to their work? 

*NOTE: The RARE Health Equity Forum and the RARE Advocacy Summit are two different events and require two different Advocate Support Program applications. If you are also interested in receiving Advocate Support for the RARE Health Equity Forum, you must submit a separate application here. You cannot receive support for both events.

What is the procedure for reimbursement?

  1. Fill out the Advocate Support application form HERE.
  2. By July 17th, you will be notified of your Advocate Support award status by email. 
  3. If awarded and accepted, you will need to sign and return a Advocate Support Agreement by the date indicated in the awardee email. If you are awarded an Advocate Support and do not register for the RARE Advocacy Summit or do not return your Advocate Support Agreement by the date indicated in the agreement, your Advocate Support Award will be voided. 
  4. Domestic and International recipients are paid by electronic transfer. In the weeks before the event, you will receive an email from Bill.com to set up your account for funds to be distributed electronically following the event. You will be required to set up your Bill.com account, including adding your banking information. If you already have a bill.com account with accurate banking information, no action is required. 
  5. The reimbursement process begins upon check-in at the event registration desk on September 19. Once check-in is confirmed, Global Genes will begin electronically disbursing funds to awardees. Please note, on average it takes 2-4 business days for funds to reach your bank account. In some circumstances, it may take up to 30 days after the event to receive a reimbursement from Global Genes.  

 If this creates an undue financial hardship for you, please notify Global Genes.

 What are the conditions of acceptance?

If you are awarded a conference Advocate Support, you agree to the following conditions:

  1. Conference Registration: You must register and pay the conference fee as well as all associated travel and lodging costs. 
  2. Bill.com Account: Complete setting up your account on bill.com for fund distribution.
  3. In-Person Attendance:
    1. Attend a minimum of 50% of the events/sessions (meals excluded). 
    2. If you are active on social media (Instagram, Facebook, LinkedIn, Twitter), share photos of your experience during your time at the RARE Advocacy Summit by tagging @globalgenes #RAREAdvocacySummit #WeekInRare.
    3. Upon request, film a 1-2 minute video for social media with the Global Genes marketing team sharing your story, your rare disease connection, and about your time at the event.
    4. Upon request, assist Global Genes with onsite support if it would not impose you undo hardship (eg. monitoring rooms during a session or helping run a small group luncheon).
  4. Use: Use the Advocate Support award explicitly for conference-related expenses.
  5. Knowledge Sharing:
    1. Complete a post-event survey within 7 days of the event.
    2. Complete an Advocate Support Program feedback survey within 7 days of the event.

Failure to meet the conditions of acceptance may jeopardize your eligibility for the 2024 Advocate Support program.

How can I register for the conference and what is the price to attend?

  • Register In-Person for the conference HERE. Please feel free to register with any additional discount codes you may have. 
  • Registration fees can be reviewed by clicking HERE and selecting the “fee” link on the top toolbar of the page.

Is there a hotel room block for this conference?

  • Global Genes has secured a discounted room block at a rate of  $239.00 + 16.7% tax. To book a room as part of our block, please click HERE. Rooms are available on a first-come, first-served basis and all reservations must be made by August 11. Reserve early as the block does sell out. 
  • You are not required to book with this hotel to be awarded the Support. 
  • Hotel Information: Sheraton San Diego Hotel & Marina, Harbor Island Drive located at 1380 Harbor Island Dr, San Diego, CA 92101

I have another question, which is not addressed here.
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