FSIG Expert Fabry Conference

Embassy Suites by Hilton Philadelphia Airport

April 08-10, 2022

Frequently Asked Questions

Q: What can I expect if I attend the FSIG Expert Fabry Conference?

Learn from guest speakers, meet with doctors who are knowledgeable about Fabry disease, and meet new families who share common concerns and experiences. The goal of this conference is to educate Fabry patients and family members. This conference is a fun opportunity to make new friends and reconnect with old friends you have not seen in a while.

Q: Who may attend the conference?

The conference is designed for Fabry patients, their family members, and caregivers. This includes affected individuals, parents, children, siblings, significant other, grandparents, and supportive friends.

Q: Is there any cost to attend?

Yes, conferences of this type are very expensive. Travel expenses to the conference and back home are not included. There is a nominal registration fee of $75.00 for the first registrant per room and $25.00 for each additional registrant eleven years and older. Children ten and younger are free. 

Q: What is included in the registration fee?

This conference is a great educational and networking opportunity that benefits everybody. We truly wish the conference could be completely free, but conference sponsorship does not cover all expenses. The registration fee is a real bargain and goes toward the cost of 2 nights’ lodging, meals throughout the conference, facility, speaker, and medical experts, plus many additional conference expenses.

Q: How many will a room accommodate?

All rooms accommodate up to 6 people. The room cost is included in the registration fee.

Q: Is there a limit to conference attendance – how do I register?

Yes, there are a limited number of rooms available.  We wish we could accommodate everyone in the Fabry community, but funds do not allow this. We have contracted for a block of 50 rooms per night. Availability is limited on a first-come, first-serve basis. To register, please visit https://fabry.org/fsig-expert-fabry-conference/ and fill out the online registration form.

Q: Is there a deadline to register for the conference?

Travel assistance registration deadline is February 08, 2022.

The registration deadline is March 01, 2022 or when the block of rooms is filled, whichever comes first.  

Q: Will childcare be provided?

Childcare will be provided. The cost of childcare is included in the registration fee. Children of all ages are encouraged to utilize the Youth Hangout. Activities and supplies will be at your child’s disposal. Dependable and reliable adults will be watching your children. We believe that if parents know their children are safe they will get the most from the conference. If you are bringing children to the conference please let us know their ages and whether they will be utilizing the Youth Hangout on the registration form or online.

Q: Can I extend my stay at the hotel?

If you wish to extend your stay, we have negotiated so you may obtain a room for the same reduced rate of $175.00 plus tax, charges, and other fees for three days before or three days after the conference. You will have to call the hotel and book and pay for these rooms yourself, just mention that you will be attending the FSIG Expert Fabry Conference.

Q: Do I have to stay in the conference hotel?

Staying at the same hotel the conference is held at is important and lends itself to the very purpose of the conference. You do not have to stay at the same hotel, but FSIG will not pay for your hotel room otherwise and cannot guarantee anything regarding your alternate choice of hotel.

Q: If I am unable to attend the full conference, can I pay a reduced registration fee?

There is no adjustment to the fee for days not attended. The fee will be the same whether you stay one or two nights. FSIG’s overall event costs remain the same whether you attend part or all of the conference.

Q: May I receive a refund if I am not able to attend the conference?

If you cancel your registration by March 04, 2022, you will receive a full refund. After that date, no refund will be provided. All refunds will occur after the conference and may take up to two weeks. 

Q: Will I be able to talk to doctors about my/loved one’s Fabry disease?

Many of the doctors are willing to talk about your disease to the best of their ability on an individual basis. Limitations on discussions will probably exist due to available time, available information, and other factors. Please feel free to take advantage of this conference time to ask questions of the knowledgeable experts on Fabry disease. 

Q: Do I have to pay for my hotel room during the conference?

The cost of your hotel room for Friday night and Saturday night is covered by FSIG. Your only additional costs beyond the nominal registration fee would be if you stay any extra nights, order room service, rent a movie, or request any additional services that are charged to your room.