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FSIG Expert Fabry Conference
Rosen Shingle Creek
9939 Universal Blvd
Orlando, FL 32819-8701


The Fabry Support & Information Group proudly announces the dates for the 2023 Hybrid FSIG Expert Fabry Conference on February 25-27 in Orlando, Florida.

This year FSIG celebrates its 10th year of annual expert Fabry conferences! You will receive valuable, up-to-date information about Fabry’s disease, have the opportunity to network with others, hear informational presentations and real patient stories, engage in new breakout sessions, and be apart of our special awards presentation. You don’t want to miss this special anniversary conference!

NOW CLOSED – Limited assistance is available through a lottery. Please fill out the Conference Assistance Request Form found here or the one you received by mail or you can call us at 886-303-2279.

Your registration fee will include:

  • Hotel room for Saturday & Sunday nights
  • Saturday & Sunday night meals
  • Sunday lunch
  • Sunday & Monday breakfast

*This weekend is valued at $1,000 per person.

Register Here

FSIG Expert Fabry Conference Agenda
Rosen Shingle Creek
9939 Universal Blvd
Orlando, FL 32819-8701

Saturday, February 25, 2023

3:00 PM 6:30 PM Registration/Check In      

Stop by any time to check-in with us and get your registration information and name badge for the conference.

3:00 PM – 6:30 PM  Exhibits Open                                                                                                         

5:00 PM – 6:15 PM Fabry Roundtable with Dawn Laney                                                      

Just been diagnosed? Want to freshen your memory on the basics of Fabry Disease? Come join us!

6:30 PM – 9:00 PM Fabry Kickoff                                                                                                                

Get to know other Fabry patients and family members. Eat a little! Relax a little!!

Sunday, February 26, 2023

7:15 AM – 8:05 AM Breakfast

7:45 AM – 4:30 PM  Registration / Info Desk Open

8:00 AM – 4:30 PM Youth Hangout for 3 years old to 12 years old

8:15 AM – 8:19 AM Welcome – Jack Johnson

8:20 AM– 8:34 AM Diamond Sponsor  – Sanofi

8:35 AM – 8:49 AM Diamond Sponsor – Chiesi GRD

8:50 AM – 8:55 AM Gold Sponsor – Amicus Therapeutics

9:00 AM– 10:00 AM GENERAL SESSIONS                                                                                                  

  • Session 1     Dr. Rob Hopkins

10:00 AM – 10:30 AM 1st Break

10:30 AM– 12:00 PM GENERAL SESSIONS Resumes

  • Session 2     Dr. John Jefferies
  • Session 3     Dr. Joseph Ray

12:00 PM – 1:00 PM Lunch

1:00 PM – 2:00 PM Industry Updates

  • Chiesi Global Rare Disease
  • Sangamo Therapeutics
  • Amicus Therapeutics
  • Sanofi

2:00 PM – 2:15 PM 2nd Break

2:15 PM – 2:59 PM Industry Updates continued

  • 4D Molecular Therapeutics
  • Freeline Therapeutics
  • AllStripes
  • Protalix

3:00 PM – 3:44 PM 1st Breakout Sessions

  • Session A     Rob Hopkin     Teen Session
  • Session B     Joseph Ray      Men’s Session
  • Session C     Dawn Laney    Fabulous Females

3:45 PM – 4:30 PM 2nd Breakout Sessions

  • Session A    Kim McCarthy      The Conversation Project
  • Session B    Molly McCarthy    Adopting the Future Through Advocacy

4:30 PM– 6:30 PM Break you are on you own to explore or relax

6:30 PM – 9:00 PM Dinner, Recognition, Group Photo

Monday, February 27, 2023

7:45 AM – 8:45 AM   Breakfast

9:00 AM – 11:00 AM   Final Session Rob Hopkin

11:00 AM    Closing Remarks by Jack Johnson

Patient Speakers

Kim McCarthy (2)

Kim McCarthy

Nurse, Wife, Mom, Fabry Patient

Molly McCarthy

Daughter, Sister, Friend, Young Professional

Physician Speakers

Rob Hopkin

Rob Hopkin

MD, Associate Professor of Clinical Pediatrics Cincinnati Children’s Hospital Medical Center

John Jefferies

MD, MPH, FACC, FAHA, FHFSA, FAAP Jay Michael Sullivan Distinguished Chair in Cardiology, Professor and Chief of the Division of Adult Cardiovascular Diseases, Director of the Methodist University of Tennessee Cardiovascular Institute, Professor of Pediatric Cardiology and Preventive Medicine at the University of Tennessee and Research Member of St Jude Children’s Research Hospital in Memphis, Tennessee

Joseph Ray

MD, Medical Genetics Director Division of Medical Genetics and Metabolism, Associate Professor Department of Pediatrics

Genetic Counselor & Research Coordinator, Assistant Professor & Director Emory Genetic Clinical Trial Center

Dawn Laney

MS, CGC, CCRC, Genetic Counselor, Research Coordinator, Assistant Professor, Director of Emory Genetic Clinical Trial Center, LSDC Program Leader

Industry Speakers

Duane Clark

Duane Clark

General Manager, Rare Diseases, Sanofi

Bettina Cockroft_Sangamo

Bettina Cockroft

MD, MBA, Sangamo Therapeutics Chief Medical Officer

Jen Coker_Sanofi

Jen Coker

MSN, RN  Sanofi Patient Education Liaison

Terry Ferlita_Sanofi

Terry Ferlita

CGC,  Sanofi Patient Education Liaison

Lee Ann_Amicus

Lee Ann Lawson

BSN, MS, APRN, Amicus Therapeutics Associate Director

Meghan McGee_Chiesi

Meghan McGee

PHD,  Chiesi Associate Medical Director of Rare Diseases

Nita Patel_Amicus

Nita Patel

RN, Amicus Therapeutics Senior Director of Patient Advocacy

Stuart Siedman_Chiesi

Stuart Siedman

Chiesi Global Rare Diseases Head of Patient Advocacy

Erin Smith_AllStripes

Erin Smith

MPH, AllStripes Director of Patient Engagement

Mitra Tavakkoli Avrobio

Mitra Tavakkoli

MD, PharmD, Vice President of Clinical Development 4DMT

Andrew Whittaker_Freeline

Andrew Whittaker

MBChB, MRCP, MDRes, Freeline Senior Medical Director

Diamond Sponsors

Gold Sponsors

Silver Sponsor

Partner Sponsor


FSIG will be bringing back two special awards this year: Caregiver and Best Doctor or Medical Professional Award!

If you or a loved one has received Exceptional Care from your Caregiver (mom, dad, grandmother, etc), now is your chance to show your gratitude.

Caregiver Nominations  (Please print the form and mail, email or fax the completed form to FSIG.)

Do you know a doctor, genetic counselor, nurse or office staff who defines the meaning of caring? Is there a healthcare professional who has gone above and beyond to help support you or your family? If someone comes to mind when you hear these questions, then take a minute to nominate that individual for the Best Doctor or Medical Professional Award!

Medical Professional Nominations  (Please print the form and mail, email or fax the completed form to FSIG.)

All awards will be presented at the 2023 FSIG Expert Fabry Conference in February. Nominations will be accepted now through January 10, 2023. Complete these forms today and spread the news!

Mail: FSIG, PO Box 510, Concordia, MO 64020
Fax: 660-463-1356

Frequently Asked Questions

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.

Will there be a virtual option for this conference?

Yes, there will be a live stream of the conference for those that wish to view the presentations online. There will be a $25 registration fee per household for the virtual option. Registration is required.

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, click the registration link above to fill out the on-line registration form.

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 $209.00 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.

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

If you cancel your registration by January 20, 2023, 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.

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.

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.

Is there a deadline to register for the conference?

Conference assistance registration deadline, and the registration deadline is January 10,2023. or when the block of rooms is filled, whichever comes first.

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.

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.

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.

How many will a room accommodate?

Queen rooms accommodate up 4 people. The room cost is included in the registration fee.

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 on-line.

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.

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

The cost of your hotel room for Saturday night and Sunday 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.