Week in RARE 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 for Support

Week in RARE combines the RARE Health Equity Forum and RARE Advocacy Summit, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This is a unique opportunity to gather and engage rare disease advocates and leaders in the same space for conversation.

  • Wednesday, September 25 – Saturday, September 28, 2024
    • September 25: Membership Meetings & Freshman Orientation
    • September 26-27: RARE Advocacy Summit
    • September 27: Champions of HOPE Ceremony
    • September 28: RARE Health Equity Forum
  • Location: Loews Downtown, Kansas City, MO

Thank you for your interest in applying for Advocate Support for the 2024 Week in RARE.

The amount of the Advocate Support may not cover all costs associated with the conference. If you receive support, you will still be responsible for booking your own travel and lodging.

Note: If you’re having trouble loading or submitting the application, please clear your cookies/cache and try a new browser. For more on how to do this, click here

Important Dates to Remember

  • May 15: Advocate Support application opens
  • July 12: Advocate Support applications close at 12:00 pm (noon) ET
  • August 5 – 9: All status notifications will be emailed
  • September 25 – 28, 2024:
    Week in RARE at the Loews Downtown, Kansas City, MO
  • September 25: Reimbursement process begins upon check-in at the event registration desk.

If you have any questions, please contact [email protected] 

All dates are tentative and subject to change

FREQUENTLY ASKED QUESTIONS

  1. How do I apply for Advocate Support?

Apply for Advocate Support HERE. Applications are due by 12:00 PM ET (noon) on July 12, 2024

  1. Who is eligible to apply?

Advocate Support is available to individual patients, close family and friend 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. 

  1. 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. 

  1. How many Advocate Support stipends  is my household or organization eligible for?

Only one representative from a patient advocacy organization or household is eligible to receive advocate support. Please keep this in mind and consult with your organization/household before submitting.

If multiple individuals from one household or organization apply, Global Genes will determine who will be awarded the Advocate Support stipend on behalf of that household or organization. 

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

If you were awarded Advocate Support (formerly Patient Advocate Stipend) to any 2022 or 2023 Global Genes Event (RARE Drug Development Symposium, Health Equity Forum, RARE Advocacy Summit) you are still eligible to apply. However, Global Genes will prioritize those who have not previously been awarded Advocate Support. 

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

No, Advocate Support is only available to individuals who will attend the conference in person.

7. 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. 

NOTE: Registration for the event costs between $175 and $350 . Other fees to consider include meals not included in the registration fee, transportation to and from the airport, flights or other ground transportation and the hotel. The total of these costs are likely to be more than your advocate support award.

8. What will the Advocate Support stipend cover?

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

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

9. How many Advocate Support stipends  will be awarded for the 2024 Week in RARE? 

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

10. 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 a stipend award 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 2024 Week in RARE conference? 
  • 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 2024 Week in RARE conference 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? 

11. What is the timeline for the conference Advocate Support awards?

  • May 13th: The Advocate Support application opens
  • July 12th: The Advocate Support applications close at 12:00 pm (noon) ET
  • August 5th – 9th: All status notifications will be emailed
  • September 26 – 28, 2024: Week in RARE at the Loews Downtown, Kansas City, MO
  • September 25th: The reimbursement process begins upon check-in at the event registration desk. Once check-in is confirmed, Global Genes will begin the process of disbursing funds to awardees. Please note that it may take up to 30 days after the event to receive a reimbursement from Global Genes.

This is a tentative schedule and the timeline is subject to change

12. If I receive Advocate Support, what will I be responsible for booking on my own? 

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

13. What is the procedure for reimbursement?

All reimbursements will take place following the 2024 Week in RARE conference. Procedures will be outlined in your agreement. 

Please note, you will be required to cover the costs of registration, transportation and lodging upfront. Reimbursements will not be issued until after the event is complete. 

If you have questions about this or it creates undue financial hardship, please contact [email protected]

14. What are the conditions of acceptance?

You must check-in to the event and attend a minimum of 65% of the event sessions and complete setting up your account on bill.com for fund distribution.

Failure to check-in to the event in person and meet the conditions of acceptance may jeopardize your 2024 reimbursement and eligibility for 2025 Advocate Support. 

15. Is there a hotel room block for this conference?

Global Genes has secured a discounted room block at the rate of $239.00 + 18.475% 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 September 3,, 2024. Reserve early as the block does sell out.

16. I have another question, which is not addressed here.

Please reach out to us at [email protected]

Plan Your Visit

Loew’s Hotel – Kansas City
1515 Wyandotte Street
Kansas City, Missouri, 64108

Global Genes has secured a discounted room block at the rate of $239.00 + 18.475% tax. Rooms are available on a first-come, first-served basis and all reservations must be made by September 3, 2024. Reserve early as the block does sell out.

Airfare Discounts: Delta and United are partnering with Global Genes to offer attendees discounted airfare!

Delta: Call Delta Meeting Network® at 1.800.328.1111 Mon – Fri, 8:00 AM – 6:30 PM (EST) and refer to Meeting Event Code NY39F, or click the button below.

United: Call United Meetings Reservation Desk Mon – Fri at (800) 426-1122 and use discount code ZPH3668157 or click the button below.

Need more information about Week In RARE?

Questions about attending, submitting a poster, or exhibiting at the event?

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