FOP Registry Rewards Program Frequently Asked Questions

Starting October 1, 2019, any FOP Registry participant who completes an entire Survey (Enrollment or Follow-Up) will receive a $25 USD Visa gift card. 

1. What is the FOP Registry Rewards Program?

The IFOPA will provide a $25 USD electronic prepaid debit card to Registry participants who complete an entire Survey.  The program will begin on October 1, 2019.

2. Why is the IFOPA launching the FOP Registry Rewards Program?

The IFOPA wants to thank FOP Registry participants for the time and effort they put into completing their Registry surveys.  We hope this program results in more surveys being completed, which will help researchers better understand FOP.  

3. How can I earn an FOP Registry reward?

Each time a participant completes a Survey in its entirety, he or she will be eligible for a Registry reward.

  • If you are new and want to join the Registry to get your first reward, on October 1 (or after) go to to join.
  • If you have started the process but haven’t completed your Enrollment Survey, on October 1 (or after) go to to log in and complete it.
  • If you have already enrolled, watch for an email from [email protected] asking you to complete your Follow-up Survey. These emails come every six months and you have 30 days to complete the Follow-up Survey.

Participants must reside in a country where electronic rewards are permissible. If you reside in a country where electronic rewards are not permissible, please contact FOP Registry Project Manager Sammi Kile.

4. How can I check to see if I’m already enrolled in the Registry?

If you are unsure if you are already enrolled in the Registry, please contact FOP Registry Project Manager Sammi Kile. The FOP Registry Team will help you log in to your current account if you already have an account and have forgotten your password.

5. What is the value of the reward and what type of reward is it?

The electronic rewards are worth $25 USD and are from Visa. For participants residing in foreign countries, this reward will be converted to your local currency at the exchange rate published by the London edition of the Financial Times as of the business day immediately prior to the date on which that payment is made. Visa rewards are redeemable at most stores and websites internationally.

6. When and how will the rewards be distributed?

Rewards will be distributed by email on a monthly basis starting in October 2019. A link to the redeemable reward will be sent to the participant’s email address associated with their Registry account. The rewards will be sent from the FOP Registry (Sammi Kile).

7. How do I redeem the reward?

Rewards can be used online or anywhere the Visa credit card is accepted. The electronic reward will come as a link in an email from Sammi Kile. After clicking on “Redeem” in the email, you will be presented with your $25 USD Visa reward. Each card has a unique number associated with it which will be needed when you use it. The rewards need to be used within 12 months of receipt or they will expire and lose their value.

8. How long will the reward program run?

The IFOPA is testing this program and will continue to evaluate whether it’s helping improve Registry participation.

9. Who can participate in the FOP Registry Reward Program?

Anyone with FOP who would like to enroll in the FOP Registry and completes the Surveys can participate. If you’re already a Registry participant, you are eligible for all upcoming future surveys. Registry participants need to reside in a country were the rewards are permissible. For Registry participants residing in countries where rewards are not permissible, please contact FOP Registry Project Manager, Sammi Kile.

10. What if I have more questions about the FOP Registry Reward Program?

If you have additional questions, please contact FOP Registry Project Manager, Sammi Kile.


The IFOPA oversees the FOP Registry on behalf of the FOP community thanks to generous support from Blueprint Medicines, Ipsen and Regeneron Pharmaceuticals. Thank you to the Radiant Hope Foundation for the visionary funding that launched the FOP Registry.

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