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FSIG Expert Fabry Conference

The Fabry Support & Information Group proudly announces the dates for the 2022 Hybrid FSIG Expert Fabry Conference on April 8-10 in Philadelphia, PA.

This year FSIG celebrates 26 years of service to our Fabry community and our 9th annual expert Fabry conference. 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 Conference!

Embassy Suites by Hilton
9000 Bartram Avenue
Philadelphia, PA 19153
Phone: 215-365-4500

Registeration Closed

 

 

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: 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 no registration fee for the virtual option.

 

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 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, click the registration link above and complete the on-line registration form.

 

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

Travel assistance registration deadline is February 8, 2022.

The registration deadline is March 1, 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 on-line.

 

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 4, 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.

Friday, April 8, 2022

3:00 PM -
7:00 PM
Registration
5:00 PM -
6:15 PM
Fabry Roundtable
Dawn Laney & Sarah Nelson
6:30 PM -
9:00 PM
Fabry Social
Get to know other Fabry patients & family members

Saturday, April 9, 2022

7:30 AM -
8:30 AM
Breakfast
8:00 AMRegistration Opens
9:00 AMExhibits Opens
8:15 AM - 8:19 AMWelcome
Jack Johnson
8:20 AM - 8:34 AMDiamond Sponsor Presentation
SANOFI
8:35 AM - 8:44 AMDiamond Sponsor Presentation
CHIESI Global Rare Diseases
8:45 AM - 8:50 AMGold Sponsor Presentation
AMICUS Therapeutics
9:00 AM - 12:00 PMGENERAL SESSIONS
Session 1: Dr. Rob Hopkin
Session 2: Dr. John Jefferies
Session 3: Dr. Eric Wallace
Session 4: Dr. Seema Kanwal
12:00 PM -
1:00 PM
Lunch
1:00 PM -
2:35 PM
INDUSTRY UPDATES
~ Sanofi
~ Amicus Therapeutics
~ Chiesi Global Rare Diseases
~ 4D Molecular Therapeutics
~ Sangamo Therapeutics
~ LDRTC
~ Allstripes
2:35 PM -
2:55 PM
Breaktime!
2:55 PM -
3:40 PM
BREAKOUT SESSION 1
Session A
Fabulous Fabry Females
Dawn Laney
Session B
All About Teens & Beyond
Dr. Rob Hopkin
3:45 PM -
4:30 PM
BREAKOUT SESSION 2
Session A
Legislative Initiative & Newborn Screening
Session B
Disability & Transplants: A Patient's Perspective
Paul Rakoski
Session C
Chit Chat Room
6:30 PM -
9:00 PM
Dinner and Awards

Sunday, April 10, 2022

8:00 AM -
8:45 AM
Breakfast
Visit with our Sponsors and Exhibitors in the Virtual Exhibit Hall
9:00 AM -
10:30 AM
Dr. Kendra Bjoraker Patient Discussion
10:30 AMClosing remarks

Rob Hopkin, MD

Robert Hopkin, MD is an Associate Professor of Clinical Pediatrics at Cincinnati Children’s Hospital Medical Center.  Dr. Hopkin graduated from the University of Nevada Medical School in 1990.  He completed his residency and chief residency in Pediatrics at the Phoenix Children’s Hospital, Maricopa Medical Center Pediatrics Residency Program in 1994. He completed his training in Medical Genetics at Cincinnati Children’s Hospital Medical Center in 1997.

John Jefferies, MD, MPH, FACC, FAHA, FAAP, FHFSA, FESC, FRCPE

Dr. Jefferies is the 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. He completed his combined pediatric and adult cardiology training at the Baylor College of Medicine in Houston, Texas at the Texas Children’s Hospital and the Texas Heart Institute. He is the lead Editor on two textbooks on cardiology and has authored or co-authored over 230 peer-reviewed manuscripts and book chapters on cardiomyopathy, cardiovascular genetics, and advanced heart failure.

Eric Wallace, MD, FASN

Dr. Wallace is a native of Alabama. He serves as the Director of Telemedicine at UAB, the director of UAB Home Dialysis Program and co-director of the UAB Fabry Disease Clinic. Since becoming faculty, his research has been focused on eliminating geographic and socioeconomic barriers which prevents patients from accessing specialized care.  Primarily, he has focused on telemedicine in the provision of care in home dialysis and rare diseases such as Fabry disease, a rare genetic disease.He has ongoing research and has published on the role of geography in access to home dialysis, as well as research in providing home dialysis follow up remotely using telemedicine. Due to his research, he was named to the American Society of Nephrology Kidney Health Initiative that is focused on furthering the use of technologies such as telemedicine and telemonitoring to improve the care of patients on home dialysis. Currently, the UAB eMedicine program under his leadership now is able to deliver direct-to-patient, ambulatory scheduled, and inpatient care across the state.  Inpatient telehealth programs include telestroke, teleICU, telenephrology, and tele-general neurology. Over 143 providers are privileged to do telehealth. Furthermore, the UAB eMedicine Program is enabled to do remote patient monitoring.  It is his hope that with these studies, the physician workforce distribution issues can be addressed and access to care across the country can be improved. Dr. Wallace is the principal investigator on multiple trials related to Fabry disease and is dedicated to the improvement of care for this patient population.

Kendra J. Bjoraker, PhD, LP

Dr. Kendra J. Bjoraker is a pediatric neuropsychologist. She served as faculty at University of Minnesota and at the University of Colorado-Denver/Children’s Hospital Colorado. She is known for her expertise in lysosomal storage diseases and other inborn errors of metabolism, and neurodegenerative diseases. She is a presenter, researcher, and consultant with extended publications in rare genetic diseases and experience in clinical trial development. Dr. Bjoraker owns a consultancy business, 3:1 Neuropsychology Consultants, in Minneapolis, Minnesota. She continues her passion for raising awareness and engaging patients.

Seema Kanwal, ND

Dr. Kanwal has been a practicing naturopathic doctor in Vancouver since 2006. Dr. Seema Kanwal’s journey to naturopathic medicine was motivated by her enthusiasm for learning and a keen interest in the human body. She has extensive experience with and is passionate about working with individuals who have rare genetic diseases and suffer many stress related conditions as a result such as mental health issues, insomnia, and low energy. In the treatment of patients, Dr. Kanwal will develop a treatment plan that respects the highly unique needs of the individual. Through lifestyle modifications and supportive interventions, Dr. Kanwal inspires patients to learn about and engage in a healthy lifestyle.

Dawn Laney, MS, CGC, CCRC

Dawn Jacob Laney is a genetic counselor, assistant professor, clinical researcher, program leader of the lysosomal storage disease center, and director of the genetic clinical trials center in the Department of Human Genetics at Emory University in Atlanta, Georgia.   Her clinical and research interests are focused on Fabry disease. She is a co-founder of ThinkGenetic, Inc. which empowers patients who want to know about possible genetic causes for their medical issues or obtain real-life answers to their questions about the impact of living with a genetic disease.  Ms. Laney also enjoys writing children’s books (most of which are about living with Fabry disease).

Paul Rakoski, Fabry Patient Speaker

Paul was diagnosed with Fabry Disease in 2007 after undergoing a series of tests to determine the cause of his kidney disease. He was the first in his family diagnosed followed by 4 other family members. At the time, he and his family didn’t foresee the road and hurdles that go along with Fabry Disease and kidney failure. He was fortunate enough to undergo a pre-emptive transplant in 2009, receiving the gift of life from a very special college friend. As a result, he has taken an active role in the Fabry Disease, Kidney, and Transplant communities as a way of paying it forward to others who may benefit from improved treatment options. Paul serves on the patient advisory board for a pharmaceutical company, volunteers for Fabry Disease support organizations, and has worked with patient advocacy groups on Capitol Hill. He has also participated in the Transplant Games of America and the World Transplant Games multiple times, winning medals in swimming, track and field, and golf events.

Sarah Nelson, Fabry Patient Speaker

Patient, advocate, public speaker and clinician are just a few hats that Sarah Nelson wears on a daily basis. As a Fabry patient, Sarah has lived with the disease and has used her experiences to advocate for others. She has worked with youth living Fabry disease and strives to promote connection in the rare disease community. Sarah is also a Mental Health Therapist, giving her a perspective of how impactful rare and chronic illnesses can be to both patients and their families. Sarah is excited to share her experiences, what she has learned and hopes to inspire others to own their story as a patient living with Fabry disease.

James Romano, Care & Cure Partners

James is the founder of Care & Cure Partners, which works to advance the advocacy, nonprofit, fundraising and government relations needs of patient groups. James has over 25 years’ experience working with nonprofit organizations in a government relations and advocacy capacity. Throughout his eventful career, James has worked for a Member of Congress, nonprofit organizations and a Washington, DC lobbying firm.

James began his career in patient advocacy at the age of 19. As a freshman in college, James skipped class and went to Capitol Hill, where he advocated for the passage of the Ricky Ray Hemophilia Relief Fund Act (Public Law 105-369) on behalf of the Hemophilia Community and his family members with the blood clotting disorder. Because of his family members with rare and chronic conditions. James devoted his professional life to advancing to removing barriers to access of needed health care.

In 2005, James became the Director of Government Relations and Advocacy at Patient Services Incorporated. From that position, James built relationships with multiple state and federal policymakers as well as nonprofit organizations. James focused on issues involving health insurance coverage and access to treatments and therapies including promoting the charitable assistance model. James is an expert on patient assistance issues and can guide patient advocacy groups through that process.

Giacomo Chiesi, Chiesi Head of Global Rare Diseases

As Head of Global Rare Diseases at the Chiesi Group, Giacomo Chiesi leads the team in developing and commercializing treatments for rare and ultra-rare diseases. Before joining the family business, Giacomo was a consultant with Bain & Co. and Accenture. Since then, he’s expanded the Chiesi Group presence in the US and EU and established a global portfolio and pipelines in rare diseases. Throughout his career, Giacomo has directly structured and executed deals of more than $3B in value, including sell-side to buy-side M&A, in- and out-licensing, and spinouts.

Duane Clark, General Manger – US Rare Diseases, Sanofi

Duane Clark leads the Sanofi Specialty Rare Disease US Franchise, which includes Fabry, Gaucher, Pompe, MPSI and preparing for potential new US therapeutic area launches in ASMD and GM2.

He is a 30-year veteran in the pharmaceutical and biotechnology industry focused primarily on specialty care. Over his career he has held executive leadership positions in General Management, Sales, Marketing, Commercial Operations, Project Management, and was a partner an International Consulting/CRO Company for five years.

Duane has contributed to multiple successful product launches throughout his career in Rheumatology, MS, Transplantation, Dermatology, Hematology, Infectious Disease, Oncology, and of course Rare Disease. He has lead teams in the US, EU, and Canada.

Duane’s philosophy is inclusive leadership and culture drive success, and collaborative teams transition vision to reality. During his career he has committed himself to keeping the patient first and working effectively with others across all functions and backgrounds. Duane’s winning is forward leadership approach is one team, common goals, single mission.

Pronabesh DasMahapatra, Sanofi Global Project Head

Pronabesh DasMahapatra is the Global Project Head, Rare Disease Clinical Development at Sanofi. A medical doctor and epidemiologist by training, prior to joining Sanofi, Pronabesh held senior scientific roles in academia and the healthcare industry. After medical school, Pronabesh served as a medical officer for three years. He subsequently began his research career at the Center for Cardiovascular Health, Tulane University, studying the evolution of cardiometabolic risk from birth to middle age. At Sanofi, Pronabesh leads the Fabry program for investigational and marketed products that address high unmet medical needs. His ambition is to advance patient-centered healthcare by evolving the scientific understanding of clinical, economic, and humanistic aspects of disease. His work is documented in biomedical journals and books.

Richard Elles, AllStripes Director of Patient Advocacy & Industry Engagement

At AllStripes, Rich is responsible for creating meaningful partnerships in the foundation and patient advocacy world with the goal of advancing treatments for people affected by rare disease. In addition to connecting with organizations, he works to incorporate the patient voice into advocacy and education efforts by sharing and amplifying community stories.

Irene Koulinska, Chiesi Medical Affairs

Irene Koulinska, MD, ScD is a medical affairs professional with 15+ years’ experience in clinical medicine and research. While doing her medical residency in Mozambique, she became involved in HIV research and later pursued a doctoral degree in immunology and infectious diseases at the Harvard School of Public Health focusing on pediatric HIV. Her work led to the identification of determinants of mother-to-child transmission of the virus and a new recombinant HIV variant with epidemic potential. Following her passion to translate research work into practical solutions to improve patients’ lives, she joined the pharmaceutical industry and has since contributed to development and study of medicines for progressive neurological and neuromuscular diseases such as multiple sclerosis and spinal muscular atrophy. Since the beginning of 2021, Irene became part of Chiesi Rare Diseases to focus on innovative treatment approaches for patients and families with Fabry disease and other lysosomal storage disorders.

Leslie Lindsey, Amicus Patient Support Director

Leslie Lindsey is the Director, Patient Support Services for Amicus Therapeutics.  She joined Amicus in 2021 and is responsible for the oversight of HUB operations – including but not limited to identifying and implementing strategic initiatives designed to expand comprehensive reimbursement solutions, improve processes, promote operational efficiencies and enhance the patient experience.   With more than 7+ years of experience in Patient Support Services, Leslie previously held positions of Program Manager and Director of Operations for 3rd party HUB service providers.  In these roles, she designed, managed and implemented Patient Support Programs across multiple therapeutic areas.  Leslie is driven to make a positive impact on people and processes everyday through faith, family and community.

She received her Bachelor of Science in Business Management from Indiana University and Master of Arts in Teaching from Spaulding University. Leslie is also a veteran of the United States Army Reserve.

She and her husband of 30+ years are the proud parents of two sons and two grandchildren.

Lauren Noll, LDRTC Senior Clinical Research Coordinator

Lauren Noll is the Senior Clinical Research Coordinator and lead in the Clinical Trials Research Department at Lysosomal & Rare Disorders Research & Treatment Center (LDRTC). She has worked in clinical trials research for 8 years, 4.5 of which have been with LDRTC. Prior to working with Rare Disease she entered clinical trials research with cancer studies.  Lauren thoroughly enjoys her job and feels blessed to be able to serve her patients as well as the rare disease community as a whole.

Cristobal Passalacqua, Sangamo Medical Lead

Chris serves as Medical Lead for the Sangamo Fabry program. He has more than 15 years of clinical and pharmaceutical experience including clinical experience as a Clinical Geneticist and in the pharmaceutical industry as Principal investigator and Medical director in clinical development for different companies.  Most recently, he was the Medical Director, Clinical Development at PTC Therapeutics where he was responsible for managing studies from First in Human to Phase III  for rare diseases and developing new endpoints for future projects.

Jinsong Shen, 4DMT Associate Director Clinical Research

Dr. Jinsong Shen has more than twenty years of experience in the research of rare diseases, enzyme replacement therapy (ERT) and gene therapy. Focus areas for his research are pathogenesis and treatment of Fabry disease and other lysosomal storage disorders.

Amanda Sowinski, Amicus Patient & Professional Advocacy Manager

Amanda joined Amicus in early 2018, initially to support Patient & Professional Advocacy activities in support of the US launch of Galafold, as well as the overall Fabry clinical program. Since then, Amanda has been a respected member of the cross-functional Pompe Team and has made significant contributions to patient-dedicated programs and cross-functional collaboration. Amanda now serves as the Global Pompe lead for the P&PA program with special focus on patient-focused drug development, educational activities to support disease awareness and serving the community needs. Amanda co-chairs the Disability and Rare Advancement in the Workplace (DRAW) initiative, an employee resource group at Amicus. The goal of this program is to draw attention to the unmet needs and break down barriers for individuals with disabilities and impairments in the workplace. Amanda is also a certified member of the mental health first aid program at Amicus, a volunteer program to support the physical and mental health and well-being of employees. Amanda is a master’s level licensed social worker with a concentration in healthcare having with experience in various settings of clinical social work, including medical and health services. Her experience includes behavior management with children and adults living with intellectual and developmental disabilities, case management and mental health support for people living with chronic health conditions and co-occurring mental health issues. Amanda also has experience as a residential therapist for a non-profit company, providing therapeutics services to group home residents with a history trauma, abuse, neglect, and chronic medical issues, such as HIV/AIDs, diabetes, and Lupus.

Diamond Sponsor

Gold Sponsor

Silver Sponsor

Partner Sponsor

Informational Sponsor

Awards

FSIG will be bringing back two special awards this year: Exceptional 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 2022 FSIG Expert Fabry Conference in April. Nominations will be accepted now through March 1, 2022. Complete these forms today and spread the news!

Mail: FSIG, PO Box 510, Concordia, MO 64020
Email: info@fabry.org
Fax: 660-463-1356

COVID-19 Information

During these challenging times, it is important we communicate the current safety protocols in advance of your trip to Philadelphia for the conference. All information is current as of this printing (3/2/22) and subject to change. Everyone is welcome to attend the conference regardless or your COVID-19 vaccination status. In Pennsylvania, COVID-19 mitigation orders have been lifted for fully vaccinated people. That means all businesses, events and venues have returned to 100 percent capacity with restrictions and any additional requirements put in place by local businesses. Our understanding is that all conference attendees are required to wear masks covering their mouth and nose in all common areas of the hotel and conference area.

Below is information from the City of Philadelphia & Embassy Suites including websites you can check as the conference becomes closer. FSIG will keep all conference registrants updated as the conference approaches.

 

https://www.vistphilly.com/covid-19resources-for-greater-philadelphia

https://www.phila.gov/programs/coronavirus-disease-2019-covid-19/

*Hotel Travel Guidelines
www.hilton.com/en/hotels/phlapes-embassy-suites-philadelphia-airport/

Please check the evolving health and safety requirements in effect where the hotel is located for specific rules and exceptions before traveling. We are committed to providing you a safe and relaxing hotel stay: for information about our initiatives related to COVID, please visit  https:\\covid.hilton.com

Airline Travel Guidelines
For anyone flying to Philadelphia for the conference please be sure to periodically check travel requirements on the airlines website.