Fabry Support & Information Group

Fabry Support & Information Group Founded in 1996, this group was created by Fabry patients to share information with others suffering from the disease and their families as well as educate about treatment options.

The Fabry Support & Information Group (FSIG) is a non-profit organization founded in 1996.
1995-DEC-25 First donation was $1,000
2000-JAN-18 Fabry Support & Information Group (FSIG) is organized as a Missouri Nonproft Corporation
2005-JUN-20 FSIG receives IRS 501(c)(3) Public Charity Determination Letter, making donations tax-deductible.

The Fabry Support & Information Group (FSIG) is a non-profit organization founded in 1996.
1995-DEC-25 First donation was $1,000
2000-JAN-18 Fabry Support & Information Group (FSIG) is organized as a Missouri Nonproft Corporation
2005-JUN-20 FSIG receives IRS 501(c)(3) Public Charity Determination Letter, making donations tax-deductible.

Operating as usual

Happy Wednesday!#1fdsm #FabryDisease #fabrydiseaseawareness #rare #raredisease #wednesdaysquote #growth
01/19/2022

Happy Wednesday!

#1fdsm #FabryDisease #fabrydiseaseawareness #rare #raredisease #wednesdaysquote #growth

Happy Wednesday!

#1fdsm #FabryDisease #fabrydiseaseawareness #rare #raredisease #wednesdaysquote #growth

Happy Wednesday!#1fdsm #Fabry #fabrydiseaseawareness #fabrydisease #wednesdaysquote #raredisease
01/13/2022

Happy Wednesday!

#1fdsm #Fabry #fabrydiseaseawareness #fabrydisease #wednesdaysquote #raredisease

Happy Wednesday!

#1fdsm #Fabry #fabrydiseaseawareness #fabrydisease #wednesdaysquote #raredisease

Happy Thursday!#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #raredisease #newyear
01/06/2022

Happy Thursday!

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #raredisease #newyear

Happy Thursday!

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #raredisease #newyear

Happy Thursday!#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #raredisease #newyear
01/06/2022

Happy Thursday!

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #raredisease #newyear

Happy Thursday!

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #raredisease #newyear

01/05/2022

Research Study - LOOKING FOR ONE MORE PARTICIPANT!

Do you care for a child with Late-Onset Fabry Disease that was diagnosed through Newborn Screening?

We're looking for English-speaking adults 18 years and older, that live in the United States, who are caretakers for an individual with Late-Onset Fabry disease that was diagnosed through newborn screening.

You will be asked to participate in a 45-minute telephone interview about you experience during and after diagnosis.

You will receive a $50 Visa gift card for your participation.

If you are interested in participating or have any questions please email Danikka Morrison at [email protected]

The title of this research study is "Caregivers' perspective on newborn screening for late-onset Fabry Disease." The principal investigator for this study is Debra Duquette. The IRB study number is STU00215618.

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #raredisease

Warmest wishes during this holiday season.Love,Jack, Connie, Lisa & Barbara#1fdsm #fabry #fabrydisease #fabrydiseaseawar...
12/23/2021

Warmest wishes during this holiday season.
Love,
Jack, Connie, Lisa & Barbara

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #raredisease #wednesdaysquote #positivity

Warmest wishes during this holiday season.
Love,
Jack, Connie, Lisa & Barbara

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #raredisease #wednesdaysquote #positivity

Happy Wednesday!#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #wednesdaysquote #raredisease
12/15/2021

Happy Wednesday!

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #wednesdaysquote #raredisease

Happy Wednesday!

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #wednesdaysquote #raredisease

We are so close to our $5,000 challenge! FSIG has raised $3,760 from our amazing Fabry community. As you may know, one o...
12/10/2021

We are so close to our $5,000 challenge! FSIG has raised $3,760 from our amazing Fabry community. As you may know, one of FSIG’s donors presented us again with raising 5K and matching it dollar for dollar. This would provide FSIG with $10,000!!!

There are just 21 days left to donate in order for us to reach this goal.

Also, FSIG is a non-profit organization so your donation will be tax deductible. What could be better! Help us to make an even bigger difference.

You may provide a thoughtful donation on-line at: https://fabry.org/donate/

To donate by check mail to:

FSIG
510 NE 2nd Street
PO Box 510
Concordia, MO 64020

We are so close to our $5,000 challenge! FSIG has raised $3,760 from our amazing Fabry community. As you may know, one of FSIG’s donors presented us again with raising 5K and matching it dollar for dollar. This would provide FSIG with $10,000!!!

There are just 21 days left to donate in order for us to reach this goal.

Also, FSIG is a non-profit organization so your donation will be tax deductible. What could be better! Help us to make an even bigger difference.

You may provide a thoughtful donation on-line at: https://fabry.org/donate/

To donate by check mail to:

FSIG
510 NE 2nd Street
PO Box 510
Concordia, MO 64020

Happy Wednesday!#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #wednesdaysquote #positive #positiveattitude
12/08/2021

Happy Wednesday!

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #wednesdaysquote #positive #positiveattitude

Happy Wednesday!

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #wednesdaysquote #positive #positiveattitude

Save the Date! April 8-10, 2022 FSIG Expert Fabry Conference will be held in Philadelphia, PA. More details coming soon....
12/08/2021

Save the Date! April 8-10, 2022 FSIG Expert Fabry Conference will be held in Philadelphia, PA. More details coming soon.

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #savethedate

Save the Date! April 8-10, 2022 FSIG Expert Fabry Conference will be held in Philadelphia, PA. More details coming soon.

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #savethedate

Hello Friends!Here's a nicely done article on gene therapy. Once you have read the article, we would love to hear your t...
12/06/2021
A Closer Look at Gene Therapy

Hello Friends!

Here's a nicely done article on gene therapy. Once you have read the article, we would love to hear your thoughts!

https://bit.ly/3lZGHb9

Our genes make us unique. Inherited from our parents, genes help determine physical features and traits like height, eye and hair color. Genes are made up of DNA, which are genetic instructions to build enzymes and proteins. Proteins make muscles, bones, and blood, among many other things in the...

Here's a great resource to add to your patient education library. The goal of this piece is to explore different gene th...
12/03/2021

Here's a great resource to add to your patient education library. The goal of this piece is to explore different gene therapy approaches to treating Fabry disease.

Thank you to Sangamo Therapeutics for providing the infographics!

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #genetherapy

Happy Wednesday! #1fdsm #Fabry #fabrydisease #fabrydiseaseawareness #wednesdaysquote #positivethinking #leadership
12/01/2021

Happy Wednesday!

#1fdsm #Fabry #fabrydisease #fabrydiseaseawareness #wednesdaysquote #positivethinking #leadership

Happy Wednesday!

#1fdsm #Fabry #fabrydisease #fabrydiseaseawareness #wednesdaysquote #positivethinking #leadership

Hello!Hope everyone had a blessed Thanksgiving!Please see the details below for an important discussion on Fabry.Beyond ...
11/30/2021

Hello!
Hope everyone had a blessed Thanksgiving!
Please see the details below for an important discussion on Fabry.

Beyond Fabry Forum - Virtual Meeting hosted by Amicus Therapeutics:
Tuesday December 7th 5:00 Eastern time or Wednesday December 15th 6:00 Eastern time
Join Alex and Anthony in a discussion about living Beyond Fabry disease. This discussion forum will allow you the opportunity to learn from others living with Fabry disease and join in the conversation.
Topics Include: Self-care, Diet and Exercise
Email [email protected] to save your spot
For US Residents Only

Hello!
Hope everyone had a blessed Thanksgiving!
Please see the details below for an important discussion on Fabry.

Beyond Fabry Forum - Virtual Meeting hosted by Amicus Therapeutics:
Tuesday December 7th 5:00 Eastern time or Wednesday December 15th 6:00 Eastern time
Join Alex and Anthony in a discussion about living Beyond Fabry disease. This discussion forum will allow you the opportunity to learn from others living with Fabry disease and join in the conversation.
Topics Include: Self-care, Diet and Exercise
Email [email protected] to save your spot
For US Residents Only

#GivingTuesday is today, the day when people come together to celebrate generosity and make an impact! And your impact w...
11/30/2021

#GivingTuesday is today, the day when people come together to celebrate generosity and make an impact! And your impact will be double with the current 5K Challenge (a generous donor will match anything up to $5,000). Please consider making a donation to help us help the Fabry community. #1fdsm #fabry #fabrydisease #fabrydiseaseawareness

https://fabry.org/donate/

#GivingTuesday is today, the day when people come together to celebrate generosity and make an impact! And your impact will be double with the current 5K Challenge (a generous donor will match anything up to $5,000). Please consider making a donation to help us help the Fabry community. #1fdsm #fabry #fabrydisease #fabrydiseaseawareness

https://fabry.org/donate/

Happy Wednesday!#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #wednesdaysquote #gratitude #thanksgiving
11/24/2021

Happy Wednesday!

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #wednesdaysquote #gratitude #thanksgiving

Happy Wednesday!

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #wednesdaysquote #gratitude #thanksgiving

Donate here:  https://fabry.org/donate/#1fdsm #Fabry #fabrydisease #fabrydiseaseawareness #givingtuesday #5Kchallenge #g...
11/23/2021

Donate here: https://fabry.org/donate/

#1fdsm #Fabry #fabrydisease #fabrydiseaseawareness #givingtuesday #5Kchallenge #generosity

Donate here: https://fabry.org/donate/

#1fdsm #Fabry #fabrydisease #fabrydiseaseawareness #givingtuesday #5Kchallenge #generosity

Happy Wednesday!#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #gratitude #gratitudepost #wednesdaysquote
11/17/2021

Happy Wednesday!

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #gratitude #gratitudepost #wednesdaysquote

Happy Wednesday!

#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #gratitude #gratitudepost #wednesdaysquote

Beyond Fabry Forum - Virtual Meeting hosted by Amicus Therapeutics: Tuesday December 7th 5:00 Eastern time or Wednesday ...
11/13/2021

Beyond Fabry Forum - Virtual Meeting hosted by Amicus Therapeutics:
Tuesday December 7th 5:00 Eastern time or Wednesday December 15th 6:00 Eastern time

Join Alex and Anthony in a discussion about living Beyond Fabry disease. This discussion forum will allow you the opportunity to learn from others living with Fabry disease and join in the conversation.

Topics Include: Self-care, Diet and Exercise

Email [email protected] to save your spot

For US Residents Only

Beyond Fabry Forum - Virtual Meeting hosted by Amicus Therapeutics:
Tuesday December 7th 5:00 Eastern time or Wednesday December 15th 6:00 Eastern time

Join Alex and Anthony in a discussion about living Beyond Fabry disease. This discussion forum will allow you the opportunity to learn from others living with Fabry disease and join in the conversation.

Topics Include: Self-care, Diet and Exercise

Email [email protected] to save your spot

For US Residents Only

Happy Wednesday!#Fabry #1fdsm #fabrydiseaseawareness #wednesdaysquote #FabryDisease #gratitude #gratitudepost
11/10/2021

Happy Wednesday!
#Fabry #1fdsm #fabrydiseaseawareness #wednesdaysquote #FabryDisease #gratitude #gratitudepost

Happy Wednesday!
#Fabry #1fdsm #fabrydiseaseawareness #wednesdaysquote #FabryDisease #gratitude #gratitudepost

Dear Friends,More good news for Fabry disease. "Preliminary results from the Phase 1/2 STAAR clinical study evaluating.....
11/05/2021
Sangamo Therapeutics Announces Preliminary Phase 1/2 Data Showing Tolerability and Sustained Elevated α-Gal A Enzyme Activity in Patients With Fabry Disease | Sangamo Therapeutics, Inc.

Dear Friends,

More good news for Fabry disease.

"Preliminary results from the Phase 1/2 STAAR clinical study evaluating... ST-920, a wholly owned gene therapy product candidate for the treatment of Fabry disease." Please read the newest press release from Sangamo Therapeutics.
https://bit.ly/305DtuF

The Investor Relations website contains information about Sangamo Therapeutics, Inc.'s business for stockholders, potential investors, and financial analysts.

11/03/2021
Happy Wednesday and National Caregiver Month!#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #wednesdaysquote #caregi...
11/03/2021

Happy Wednesday and National Caregiver Month!
#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #wednesdaysquote #caregivers #caregiver #caregiving #homecare #caregiversupport #care #homehealthcare #family #love #caregiverlife #homehealth

Happy Wednesday and National Caregiver Month!
#1fdsm #fabry #fabrydisease #fabrydiseaseawareness #wednesdaysquote #caregivers #caregiver #caregiving #homecare #caregiversupport #care #homehealthcare #family #love #caregiverlife #homehealth

10/27/2021
4D Molecular Therapeutics Reports Interim Results from the 4D-310 Phase 1/2 Clinical Trial in Patients with Fabry Disease and Provides Clinical Data Update from the 4D-110 Phase 1/2 Clinical Trial in Patients with Choroideremia | 4D Molecular...

Dear Friends,

More good news for Fabry disease! 4D Molecular Therapeutics announced interim clinical data from the Phase 1/2 clinical trial of intravenous 4D-310 in patients with Fabry disease. Please see the link for the complete Press Release: https://bit.ly/3GrCmWu

- First-ever clinical activity data reported on 4D-310 Fabry disease product candidate utilizing the proprietary C102 targeted and evolved vector invented through Therapeutic Vector Evolution - AGA enzyme activity was within, or significantly above, the normal range in all three patients (up to

Happy Wednesday!#Fabry #FabryDisease #fabrydiseaseawareness #1fdsm #wednesdaysquote #change
10/27/2021

Happy Wednesday!
#Fabry #FabryDisease #fabrydiseaseawareness #1fdsm #wednesdaysquote #change

Happy Wednesday!
#Fabry #FabryDisease #fabrydiseaseawareness #1fdsm #wednesdaysquote #change

Hello Friends,AVROBIO is recruiting for FAB-GT, a Phase1/2 clinical trial evaluating the safety, tolerability and effica...
10/25/2021

Hello Friends,

AVROBIO is recruiting for FAB-GT, a Phase1/2 clinical trial evaluating the safety, tolerability and efficacy of AVR-RD-01, an investigational single-dose gene therapy for the potential treatment of #Fabry disease.

Learn more by contacting 1-877-330-5216 and visiting https://www.fabryclinicaltrial.com/

Hello Friends,

AVROBIO is recruiting for FAB-GT, a Phase1/2 clinical trial evaluating the safety, tolerability and efficacy of AVR-RD-01, an investigational single-dose gene therapy for the potential treatment of #Fabry disease.

Learn more by contacting 1-877-330-5216 and visiting https://www.fabryclinicaltrial.com/

Virtual UCLA CORE Kidney Monthly ChatMonday, November 1st | 5 – 6 pm (PST) REGISTER HERE TODAY!!https://uclahs.zoom.us/w...
10/20/2021
Welcome! You are invited to join a webinar: FREE Virtual Monthly Chat with Dr. Rastogi and UCLA CORE Kidney Health Team of Experts!. After registering, you will receive a confirmation email about joining the webinar.

Virtual UCLA CORE Kidney Monthly Chat

Monday, November 1st | 5 – 6 pm (PST)

REGISTER HERE TODAY!!
https://uclahs.zoom.us/webinar/register/WN_GxLIlyDwSmmDssQCvBL0Xw

Come and learn more about Staying Healthy During the Holidays from the CORE Kidney Team! This program is hosted by Anjay Rastogi, MD PhD and Marc Coronel, Kidney Recipient and CORE Kidney Ambassador!



Please do make every attempt to attend this very important educational event that will include the importance of communication with healthcare providers, eating and exercising with discipline, stocking of medications, and much more during the holiday season. This will be a very interactive session where you will have the opportunity to directly ask questions during the event. You can also email us your questions in advance to [email protected] and we will incorporate them into the program.


Please do share with others who you think might benefit from this. It is FREE, VIRTUAL, and Open to the Public!

UCLA CORE Kidney Health Program presents our "FREE Virtual Monthly Chat with Dr. Rastogi and UCLA CORE Kidney Health Team of Experts" that will take place every first day of the month. A wide variety of topics related to kidney disease and high blood pressure, including but not limited to, preventio...

Happy Wednesday!#1fdsm #Fabry #FabryDisease #fabrydiseaseawareness #wednesdaysquote #change
10/20/2021

Happy Wednesday!

#1fdsm #Fabry #FabryDisease #fabrydiseaseawareness #wednesdaysquote #change

Happy Wednesday!

#1fdsm #Fabry #FabryDisease #fabrydiseaseawareness #wednesdaysquote #change

October's patient meeting is tomorrow with Dr. Eric Wallace. Please register by emailing us at support@fabry.org. #1fdsm...
10/13/2021

October's patient meeting is tomorrow with Dr. Eric Wallace. Please register by emailing us at [email protected]. #1fdsm #Fabry

October's patient meeting is tomorrow with Dr. Eric Wallace. Please register by emailing us at [email protected]. #1fdsm #Fabry

Happy Wednesday!#1fdsm #Fabry #FabryDisease #fabrydiseaseawareness #wednesdaysquote #BeRare #change
10/13/2021

Happy Wednesday!

#1fdsm #Fabry #FabryDisease #fabrydiseaseawareness #wednesdaysquote #BeRare #change

Happy Wednesday!

#1fdsm #Fabry #FabryDisease #fabrydiseaseawareness #wednesdaysquote #BeRare #change

Dear Fabry Community,On October 14th, United for Charitable Assistance will be bringing together policymakers and stakeh...
10/06/2021

Dear Fabry Community,

On October 14th, United for Charitable Assistance will be bringing together policymakers and stakeholders to discuss emerging coverage and access challenges and solutions. Please see below for names of Members of Congress and various patient assistance charities that will be presenting.

You can register here: https://haea.zoom.us/j/83691481173

Dear Fabry Community,

On October 14th, United for Charitable Assistance will be bringing together policymakers and stakeholders to discuss emerging coverage and access challenges and solutions. Please see below for names of Members of Congress and various patient assistance charities that will be presenting.

You can register here: https://haea.zoom.us/j/83691481173

Happy Wednesday!#1fdsm #Fabry #FabryDisease #fabrydiseaseawareness #wednesdaysquote #BeRare #raredisease
10/06/2021

Happy Wednesday!

#1fdsm #Fabry #FabryDisease #fabrydiseaseawareness #wednesdaysquote #BeRare #raredisease

Happy Wednesday!

#1fdsm #Fabry #FabryDisease #fabrydiseaseawareness #wednesdaysquote #BeRare #raredisease

Happy Wednesday!#1fdsm #Fabry #FabryDisease #fabrydiseaseawareness #wednesdaysquote #courage #BeRare
09/29/2021

Happy Wednesday!

#1fdsm #Fabry #FabryDisease #fabrydiseaseawareness #wednesdaysquote #courage #BeRare

Happy Wednesday!

#1fdsm #Fabry #FabryDisease #fabrydiseaseawareness #wednesdaysquote #courage #BeRare

Every baby born in the United States gets a newborn screening test done. The goal of newborn screening is to detect and ...
09/23/2021

Every baby born in the United States gets a newborn screening test done. The goal of newborn screening is to detect and diagnose rare diseases as early as possible so that treatment can begin, if needed, when the outcome is likely to be the best, which is before symptoms happen.

Unfortunately, not all states test for the same diseases. Before tests can be implemented on a state panel, important research is needed - and newborn screen pilot programs are a big part of that research. Please watch the newborn screening education video below and share with friends or loved ones that are expecting a baby.
https://youtu.be/HaW6w710dJc

#1fdsm #Fabry #FabryDisease #fabrydiseaseawareness #BeRare #NewbornScreeningAwareness

Every baby born in the United States gets a newborn screening test done. The goal of newborn screening is to detect and diagnose rare diseases as early as possible so that treatment can begin, if needed, when the outcome is likely to be the best, which is before symptoms happen.

Unfortunately, not all states test for the same diseases. Before tests can be implemented on a state panel, important research is needed - and newborn screen pilot programs are a big part of that research. Please watch the newborn screening education video below and share with friends or loved ones that are expecting a baby.
https://youtu.be/HaW6w710dJc

#1fdsm #Fabry #FabryDisease #fabrydiseaseawareness #BeRare #NewbornScreeningAwareness

Address

108 NE 2nd St
Concordia, MO
64020

General information

FSIG supports research, promotes education and awareness, supports related legislative issues and provides outreach programs vital to the Fabry community including a family assistance program.

Telephone

(660) 463-1355

Website

www.Fabry.org

Products

Information & Education related to the rare genetic disorder called Fabry. The information is provided as hard copy, electronicly, verbally over the phone, and

Alerts

Be the first to know and let us send you an email when Fabry Support & Information Group posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

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Comments

FSIG Expert Fabry Conference is off to a great start! Speaking now is Dawn Laney. Next up is FUN with Survivor's Holly Hoffman!
Has anyone in this group came down with covid and how sick did you get or how fast did you get over it
Walking today for Fabry and to remember someone we miss every single day. We love you daddy! #RunningforFabry Deborah Reed MishoeBobbyandKara HayesAaron MishoeRebekah ReedTim Bacon
With so many new options for treatment on the horizon, it can be quite confusing! Join us as we hear from Dr. Ganesh to speak on gene therapies and understanding the different types. Hosted by Julia Alton (Canadian Fabry Association), Jerry Walter (NFDF) and Jack Johnson (FSIG). September 11th, 2020 Time: 3pm PT, 4pm MT, 5pm CT, 6pm ET, 7pm AT, 7:30pm NT. (Canada)
Help us learn more about living with Fabry disease! AVROBIO Inc. is seeking people living with Fabry who are open to sharing their experiences, stories, and insights in a virtual focus group meeting. If you are interested in learning more, please contact [email protected]
Help us learn more about living with Fabry disease! AVROBIO Inc. is seeking people living with Fabry who are open to sharing their experiences, stories, and insights in a virtual focus group meeting. If you are interested in learning more, please contact [email protected]
Does anyone on here have PV pr polycythemia vera as well as fabry?
We hope you join us to raise funds for early diagnosis of Fabry Disease in Greenville, SC, April 4! https://facebook.com/events/s/a-tasting-for-testing-for-tots/454465478791647/?ti=as
Can anyone here give a lil support? I just started ERT after a 3 month stop due to insurance. My energy went back up to awesome! But now 1 day before my next one my energy level just hit the ground like a safe & nothing I fo is helping! Over the past week I got used to having more energy. It’s frustrating!!!!!! Like really pi***ng me off...
Both my daughters have fabry. One is 13 and the other is 14. The 14 year old got diagnosed with clinical depression. What I read it's common for fabry patients to have it. I'm wondering if there are any sights and/or groups on social media for teens who can get support from one another? I know my daughters feel as if they are the only teens with fabry. Maybe if they connect with other teens who have fabry maybe it will help them.
Hello all! I have Fabry & wrote a great/easy read book called MOMics. It’s not all about Fabry disease but I do mention it. Check it out!