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.
(3)

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 #wednesdaysquote #fabrydisease #fabrydiseaseawareness
05/05/2021

Happy Wednesday!

#1fdsm #wednesdaysquote #fabrydisease #fabrydiseaseawareness

Happy Wednesday!

#1fdsm #wednesdaysquote #fabrydisease #fabrydiseaseawareness

Happy Wednesday!#1fdsm #fabrydisease #fabrydiseaseawareness #wednesdaysquote
04/28/2021

Happy Wednesday!

#1fdsm #fabrydisease #fabrydiseaseawareness #wednesdaysquote

Happy Wednesday!

#1fdsm #fabrydisease #fabrydiseaseawareness #wednesdaysquote

HOW DOES IT WORK?Using a photo, Face2Gene can detect important measurements and features which are then compared with th...
04/23/2021

HOW DOES IT WORK?

Using a photo, Face2Gene can detect important measurements and features which are then compared with those of thousands of known syndromes. Based on the results, Face2Gene will give the healthcare provider information that may help identify possible syndromes or genetic conditions. Fabry is currently not one of those syndromes because not enough photos of patients at different ages have been analyzed. With your help, we may be able to train Face2Gene to recognized Fabry patients earlier.

Simply click below to upload frontal facial photos at different ages. If possible, make sure that the face is relaxed, with no glasses or shades.

https://fs27.formsite.com/Face2Gene/zwnpx14ntk/index.html

HOW DOES IT WORK?

Using a photo, Face2Gene can detect important measurements and features which are then compared with those of thousands of known syndromes. Based on the results, Face2Gene will give the healthcare provider information that may help identify possible syndromes or genetic conditions. Fabry is currently not one of those syndromes because not enough photos of patients at different ages have been analyzed. With your help, we may be able to train Face2Gene to recognized Fabry patients earlier.

Simply click below to upload frontal facial photos at different ages. If possible, make sure that the face is relaxed, with no glasses or shades.

https://fs27.formsite.com/Face2Gene/zwnpx14ntk/index.html

WHY SHARE A PHOTO?Physical features – including facial structure, shape, and form – can tell a healthcare provider a lot...
04/22/2021

WHY SHARE A PHOTO?

Physical features – including facial structure, shape, and form – can tell a healthcare provider a lot about a potential medical condition. Many features, like the color of your eyes and shape of your eyebrows, may be passed down through your parents, while others may be a result of your unique genetics. In genetic evaluations, it is very important to look at all of these features, because we know that physical features or patterns can help us find the correct diagnosis and cause.

Simply click below to upload frontal facial photos at different ages. If possible, make sure that the face is relaxed, with no glasses or shades.
https://fs27.formsite.com/Face2Gene/zwnpx14ntk/index.html

WHY SHARE A PHOTO?

Physical features – including facial structure, shape, and form – can tell a healthcare provider a lot about a potential medical condition. Many features, like the color of your eyes and shape of your eyebrows, may be passed down through your parents, while others may be a result of your unique genetics. In genetic evaluations, it is very important to look at all of these features, because we know that physical features or patterns can help us find the correct diagnosis and cause.

Simply click below to upload frontal facial photos at different ages. If possible, make sure that the face is relaxed, with no glasses or shades.
https://fs27.formsite.com/Face2Gene/zwnpx14ntk/index.html

WHAT IS FACE2GENE AND HOW CAN IT HELP?Every patient is unique, so healthcare providers gather as much information as the...
04/21/2021

WHAT IS FACE2GENE AND HOW CAN IT HELP?

Every patient is unique, so healthcare providers gather as much information as they can to review each case. Face2Gene has technology that helps clinicians capture and review information, access helpful resources, and even get advice from other experts. It all starts with a simple photo.

Simply click below to upload frontal facial photos at different ages. If possible, make sure that the face is relaxed, with no glasses or shades.

https://fs27.formsite.com/Face2Gene/zwnpx14ntk/index.html

WHAT IS FACE2GENE AND HOW CAN IT HELP?

Every patient is unique, so healthcare providers gather as much information as they can to review each case. Face2Gene has technology that helps clinicians capture and review information, access helpful resources, and even get advice from other experts. It all starts with a simple photo.

Simply click below to upload frontal facial photos at different ages. If possible, make sure that the face is relaxed, with no glasses or shades.

https://fs27.formsite.com/Face2Gene/zwnpx14ntk/index.html

Happy Wednesday!#1fdsm #wednesdaysquote #fabrydisease #fabrydiseaseawareness #strength
04/21/2021

Happy Wednesday!

#1fdsm #wednesdaysquote #fabrydisease #fabrydiseaseawareness #strength

Happy Wednesday!

#1fdsm #wednesdaysquote #fabrydisease #fabrydiseaseawareness #strength

Sangamo's STAAR Study is recruiting patients now!Phase I/II clinical study will explore the potential of ST-920 investig...
04/20/2021

Sangamo's STAAR Study is recruiting patients now!

Phase I/II clinical study will explore the potential of ST-920 investigational gene therapy to treat Fabry disease. See more information here:
https://fabry.org/wp-content/uploads/2021/04/STAAR-Sangamo-program-update-4.1.2021.pdf

Sangamo's STAAR Study is recruiting patients now!

Phase I/II clinical study will explore the potential of ST-920 investigational gene therapy to treat Fabry disease. See more information here:
https://fabry.org/wp-content/uploads/2021/04/STAAR-Sangamo-program-update-4.1.2021.pdf

Thank you to all who attended the 2021 FSIG Expert Fabry Conference and for those who participated in our event survey. ...
04/19/2021
2021 FSIG Expert Fabry Conference Survey

Thank you to all who attended the 2021 FSIG Expert Fabry Conference and for those who participated in our event survey. Everyone who completed the survey by noon today was entered into a drawing for a visa card and Eve Rubell is the winner! Congratulations!

The survey is still open if you would like to provide us feedback. Linked here: https://www.surveymonkey.com/r/L38F7PG

Take this survey powered by surveymonkey.com. Create your own surveys for free.

In honor of Fabry Disease Awareness Month, UCLA CORE Kidney Program will be hosting a virtual event with Anjay Rastogi, ...
04/16/2021

In honor of Fabry Disease Awareness Month, UCLA CORE Kidney Program will be hosting a virtual event with Anjay Rastogi, MD, PhD, Professor of Medicine and Clinical Chief of Nephrology. He will be speaking on Fabry disease and the risk factor for kidney disease.

Please register here in advance for this webinar. SPACE IS LIMITED! https://bit.ly/3e5Qo2R

In honor of Fabry Disease Awareness Month, UCLA CORE Kidney Program will be hosting a virtual event with Anjay Rastogi, MD, PhD, Professor of Medicine and Clinical Chief of Nephrology. He will be speaking on Fabry disease and the risk factor for kidney disease.

Please register here in advance for this webinar. SPACE IS LIMITED! https://bit.ly/3e5Qo2R

NOW OPEN! The EveryLife Foundation for Rare Diseases has established the #RAREis Scholarship Fund to help adults with ra...
04/16/2021
#RAREis Scholarship Fund

NOW OPEN!

The EveryLife Foundation for Rare Diseases has established the #RAREis Scholarship Fund to help adults with rare diseases in a variety of educational pursuits, regardless of treatment status. Thanks to the support of Horizon Therapeutics plc, one-time awards of $5,000 each will be granted up to 35 recipients for the Fall 2021 semester.

GO here to check eligibility and apply >https://bit.ly/3ggTovS

The EveryLife Foundation for Rare Diseases has established the #RAREis Scholarship Fund to help adults with rare diseases in a variety of educational pursuits, regardless of treatment status. Thanks to the support of Horizon Therapeutics plc, one-time awards of $5,000 each will be granted up to 35 r...

Happy Wednesday! #1fdsm #fabrydisease #fabrydiseaseawareness #wednesdaysquote
04/14/2021

Happy Wednesday!

#1fdsm #fabrydisease #fabrydiseaseawareness #wednesdaysquote

Happy Wednesday!

#1fdsm #fabrydisease #fabrydiseaseawareness #wednesdaysquote

Today we will hear from Fabry speakers, Sarah & Stephanie Nelson!
04/11/2021

Today we will hear from Fabry speakers, Sarah & Stephanie Nelson!

Today we will hear from Fabry speakers, Sarah & Stephanie Nelson!

Thank you to Dr. Hopkin for a great talk yesterday! He'll be back today in our first breakout session.
04/11/2021

Thank you to Dr. Hopkin for a great talk yesterday! He'll be back today in our first breakout session.

Thank you to Dr. Hopkin for a great talk yesterday! He'll be back today in our first breakout session.

Thank you to all of our sponsors! We couldn't do this without you.#1fdsm #fabrydisease #fabrydiseaseawareness
04/11/2021

Thank you to all of our sponsors! We couldn't do this without you.

#1fdsm #fabrydisease #fabrydiseaseawareness

Dr. Wallace will be speaking in 30 minutes.
04/10/2021

Dr. Wallace will be speaking in 30 minutes.

Dr. Wallace will be speaking in 30 minutes.

We are LIVE! Come visit our fabulous sponsors!
04/10/2021

We are LIVE! Come visit our fabulous sponsors!

We are LIVE! Come visit our fabulous sponsors!

04/09/2021
2021 FEFC

2021 FSIG Expert Fabry Conference LIVE!

This is next week!
04/09/2021

This is next week!

Did you know that April is National Fabry Disease Awareness month? Join us in learning more about this severely underdiagnosed and often misunderstood condition.

Our April virtual auction, benefitting research, will be held virtually on April 17th-18th. As a non-profit, we rely on your donations toward meaningful research for children and families with Fabry disease. Contributions of all sizes add up to make a big difference!

The site is live, so go check out our fantastic 20 options and save your favorites for notifications! https://www.32auctions.com/AprilT4T

Thank you in advance to all our corporate sponsors and our many individual donors.

We are all just a little excited to see you all tomorrow!
04/08/2021

We are all just a little excited to see you all tomorrow!

Happy Wednesday!#wednesdaysquote #1fdsm #fabrydisease #fabrydiseaseawareness
04/07/2021

Happy Wednesday!

#wednesdaysquote #1fdsm #fabrydisease #fabrydiseaseawareness

Happy Wednesday!

#wednesdaysquote #1fdsm #fabrydisease #fabrydiseaseawareness

Every first Saturday in April we honor all women living with Fabry Disease on International Fabry Women’s day. This day ...
04/03/2021

Every first Saturday in April we honor all women living with Fabry Disease on International Fabry Women’s day. This day was established to raise awareness about women and girls affected by Fabry Disease. Females are not just ‘carriers’!

Join us and the Fabry community by celebrating all women with Fabry!
#internationalfabrywomensday #1fdsm #fabrydisease #fabrydiseaseawareness

Every first Saturday in April we honor all women living with Fabry Disease on International Fabry Women’s day. This day was established to raise awareness about women and girls affected by Fabry Disease. Females are not just ‘carriers’!

Join us and the Fabry community by celebrating all women with Fabry!
#internationalfabrywomensday #1fdsm #fabrydisease #fabrydiseaseawareness

Fabry Awareness Month is all about telling the world about this rare disease. We hope that this year you also join us in...
04/01/2021

Fabry Awareness Month is all about telling the world about this rare disease. We hope that this year you also join us in sharing details about Fabry Disease with your family, friends and doctors and when you do so on social media, please use the hashtag #1FDSM

Fabry Awareness Month is all about telling the world about this rare disease. We hope that this year you also join us in sharing details about Fabry Disease with your family, friends and doctors and when you do so on social media, please use the hashtag #1FDSM

This year's breakout sessions are going to be so hard to choose only two! Which ones will you attend?Breakout Session 1:...
03/31/2021
FSIG April 11th.mov

This year's breakout sessions are going to be so hard to choose only two! Which ones will you attend?

Breakout Session 1:
Dr. Rob Hopkin - Pain Management
Dawn Laney - Fabulous Fabry Females
Kim Page - Nutrition
Myrl Holida - Who, What, Why & Maybes of Clinical Trials

Breakout Session 2:
Christine Cashen - How to Stay Inspired When you are so Darn Tired
Dawn Laney - Fabulous Fabry Females
Wendie Pett - Move your body for Better Health
Myrl Holida - Who, What, Why & Maybes of Clinical Trials

Let's take a peek at Christine Cashen's session!
https://vimeo.com/531376983

This is "FSIG April 11th.mov" by Sarah Kragness on Vimeo, the home for high quality videos and the people who love them.

Happy Wednesday!#1fdsm #fabrydisease #fabrydiseaseawareness #wednesdaysquote
03/31/2021

Happy Wednesday!

#1fdsm #fabrydisease #fabrydiseaseawareness #wednesdaysquote

Happy Wednesday!

#1fdsm #fabrydisease #fabrydiseaseawareness #wednesdaysquote

We are less than 2 weeks away from our annual FSIG Expert Fabry Conference! If you register this week, a registration bo...
03/29/2021
Kat Promo Video

We are less than 2 weeks away from our annual FSIG Expert Fabry Conference! If you register this week, a registration box of goodies will be delivered to your home.

This year we have a great line up of speakers; doctors, our very own Darrick Campbell and Sarah and Stephanie Nelson, and array of breakout speakers.

Also on the agenda is inspirational speaker and singer from NBC's The Voice, Kat Perkins, and she gave us a few minutes of her time for this special message to the Fabry community!
https://vimeo.com/529527854

This is "Kat Promo Video" by Holly Zelinsky on Vimeo, the home for high quality videos and the people who love them.

#wednesdaysquote #1fdsm #FabryDisease #fabrydiseaseawareness
03/24/2021

#wednesdaysquote #1fdsm #FabryDisease #fabrydiseaseawareness

#wednesdaysquote #1fdsm #FabryDisease #fabrydiseaseawareness

Sanofi Genzyme US Public Affairs & Patient Advocacy is excited to announce the opening of the nomination period for the ...
03/23/2021

Sanofi Genzyme US Public Affairs & Patient Advocacy is excited to announce the opening of the nomination period for the 5th Annual Sanofi Genzyme TORCH Awards! The TORCH Awards are an opportunity to recognize individuals of all ages who have made a significant contribution to the rare disease community! The nomination period will be open from February 26th through to April 16th 2021.

You can find the application and guidelines on the Sanofi Genzyme webpage or here: http://bit.ly/3sfCYXU

The nomination process is simple. Nominees of all ages are welcome, including children. Self-nominations are encouraged! Of note, all nominators must be age 13 and over. Sanofi Genzyme employees, former employees and relatives of Sanofi Genzyme employees are ineligible to receive the award.

To nominate, you will be asked to submit your answer to the following question:

“Please explain how the nominee has made a significant contribution to the rare disease community in one or more of the following ways: educating, empowering, advancing or connecting patients with information, resources or each other. What has been the impact of their contribution?”

Recipients for the TORCH Awards program are selected by an independent organization called Scholarship America. Sanofi Genzyme will not receive information on nominees and is not involved in the selection of winners. At the close of the application period, Scholarship America will review the nominations and award up to six nominees based on eligibility requirements. Sanofi Genzyme will contribute $5,000 to the nonprofit organization of each recipient’s choosing, subject to certain conditions.

Sanofi Genzyme US Public Affairs & Patient Advocacy is excited to announce the opening of the nomination period for the 5th Annual Sanofi Genzyme TORCH Awards! The TORCH Awards are an opportunity to recognize individuals of all ages who have made a significant contribution to the rare disease community! The nomination period will be open from February 26th through to April 16th 2021.

You can find the application and guidelines on the Sanofi Genzyme webpage or here: http://bit.ly/3sfCYXU

The nomination process is simple. Nominees of all ages are welcome, including children. Self-nominations are encouraged! Of note, all nominators must be age 13 and over. Sanofi Genzyme employees, former employees and relatives of Sanofi Genzyme employees are ineligible to receive the award.

To nominate, you will be asked to submit your answer to the following question:

“Please explain how the nominee has made a significant contribution to the rare disease community in one or more of the following ways: educating, empowering, advancing or connecting patients with information, resources or each other. What has been the impact of their contribution?”

Recipients for the TORCH Awards program are selected by an independent organization called Scholarship America. Sanofi Genzyme will not receive information on nominees and is not involved in the selection of winners. At the close of the application period, Scholarship America will review the nominations and award up to six nominees based on eligibility requirements. Sanofi Genzyme will contribute $5,000 to the nonprofit organization of each recipient’s choosing, subject to certain conditions.

You are invited to a Chronic Disease Day Livestream Series event on March 25, 2021 at 1pm. The topic for this webinar is...
03/19/2021

You are invited to a Chronic Disease Day Livestream Series event on March 25, 2021 at 1pm. The topic for this webinar is: Caregiving in America. To participate please follow Good Days: facebook.com/mygooddaysorg

We are still accepting Digital Stories! Get your phone, record a 2 to 3 minute positive story, send it to our office or ...
03/18/2021

We are still accepting Digital Stories! Get your phone, record a 2 to 3 minute positive story, send it to our office or FB page, and watch it LIVE on April 11 during our FSIG Expert Fabry Conference!

DIGITAL STORYTELLING....We are so excited to share this new addition to our conference this year!

FSIG is inviting YOU to tell us about a POSITIVE or SUCCESSFUL EXPERIENCE you have had on your Fabry journey. A patient story is an individual's personal account of their health care experience.

We will share your story during our virtual conference April 9-11. Please send us a 2 to 3 minute video by March 15, 2021.

Email to [email protected] or call 866-30FABRY (32279) to schedule an interview via Zoom.

#wednesdaysquote #1fdsm #FabryDisease #fabrydiseaseawareness
03/17/2021

#wednesdaysquote #1fdsm #FabryDisease #fabrydiseaseawareness

Today, March 11, is World Kidney Day!"Being diagnosed with kidney disease can be a huge challenge, both for the patient ...
03/11/2021

Today, March 11, is World Kidney Day!

"Being diagnosed with kidney disease can be a huge challenge, both for the patient and those people around them. Its diagnosis and management, particularly in advanced stages of kidney disease, impacts severely upon their lives by reducing their, and that of family and friends, ability to participate in everyday activities like work, travel and socialising whilst causing numerous problematic side effects – e.g. fatigue, pain, depression, cognitive impairment, gastrointestinal problems and sleep problems."

Read more here:
https://www.worldkidneyday.org/2021-campaign/2021-wkd-theme/

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

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.

Contact The Business

Send a message to Fabry Support & Information Group:

Videos

Category

Nearby government services


Other Concordia government services

Show All

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!