FREQUENTLY ASKED QUESTIONS

Who is eligible to apply?

• Patient Advocate Stipends are 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 a Patient Advocate Stipend. 

Who is not eligible to apply?

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

How many Patient Advocacy Stipends is my household or organization eligible for?
Global Genes will offer one (1) stipend per household or one (1) stipend per representative (paid/volunteer) from an organization. If multiple individuals from one household or organization apply, Global Genes will determine who will be awarded the stipend on behalf of that household or organization.  

If I was awarded a Stipend before, can I apply again?
If you were awarded a Patient Advocate Stipend to a previous RARE Drug Development Symposium or any previous Global Genes conference, you are still eligible to apply and receive this Patient Advocate Stipend. However, Global Genes will also prioritize those who have not been awarded a stipend for a previous Global Genes event.

Can I apply for a Stipend if I plan to attend virtually?
Patient Advocate Stipends are only available to individuals who will attend the conference in person. 

How do I apply for a Patient Advocate Stipend?
Apply for the Patient Advocate Stipend HERE. Applications open Monday, January 30^th are due by Monday, March 13th at 11:59 pm EST.

How much money is awarded for a Patient Advocate Stipend?
Domestic attendees are eligible to receive up to $1,000 (USD) for a Patient Advocate Stipend. International attendees are eligible to receive up to $2,500 (USD) for a Patient Advocate Stipend. 

What will my Patient Advocate Stipend Cover?
Patient Advocate Stipends 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 amount is the responsibility of the individual.

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

What is the timeline for the conference Patient Advocate Stipend awards?

• January 30^th: Patient Advocate Stipend application opens
• March 13^th: Patient Advocate Stipend applications close at 11:59 PM EST
• Week of March 20^th:  The first round of status notifications will be emailed
• Week of March 31^st: Final round of status notifications will be emailed
• May 1-3^rd: RARE Drug Development Symposium in Partnership with the Orphan Disease Center of the University of Pennsylvania will take place at the Sheraton Philadelphia Downtown, Philadelphia, PA.
• Monday, May 1^st st: 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 one month after the event to receive a reimbursement from Global Genes.

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

What is the procedure for reimbursement?

1. Fill out the Patient Advocate Stipend application form HERE.
2. Between March 20^th and March  31^st, you will be notified of your Stipend award status by email. 
3. If awarded and accepted, you will need to sign and return a Patient Advocate Stipend Agreement by the date indicated in the awardee email. If you are awarded a Stipend and do not register for the RARE Drug Development Symposium or do not return your Patient Advocate Stipend Agreement by the date indicated in the agreement, your stipend 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 May 1, 2023. 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 one month 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 travel Stipend, 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: Attend a minimum of 50% of the events/sessions (meals excluded).
4. Use: Use Stipend explicitly for conference-related expenses.
5. Knowledge Sharing: Complete a post-event survey within 7 days of the event.

Failure to meet the conditions of acceptance may jeopardize your eligibility for a 2024 Patient Advocate Stipend.

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  $209.00 + 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 April 10, 2023. Reserve early as the block does sell out. 
• You are not required to book with this hotel to be awarded the stipend. 

I have another question, which is not addressed here.
Please reach out to us at [email protected].