12/07/2022
Happy Wednesday!
Fabry Support & Information Group
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- Fabry Support & Information Group
Founded in 1996, this group was created by Fabry patients to share information with others suffering
FSIG strives to meet the ever-increasing needs of of individuals with Fabry Disease and their families. FSIG offers a range of programs and services for the benefit of the Fabry community. FSIG serves as a unified voice for many in the Fabry Community
Operating as usual
12/06/2022
Here is a frequently asked question from patients and caregivers about AllStripes, the leading research program in rare disease. We have partnered with AllStripes to create a Fabry disease research program! Learn more: allstripes.com/fabry
11/30/2022
Happy Wednesday!
11/29/2022
Today is ! If you are planning to support a great cause, please keep FSIG in mind. No amount is too small! https://fabry.org/donate/
11/29/2022
Support FSIG
Tomorrow, Nov 29th is Giving Tuesday. If you are planning to support a cause, please keep FSIG in mind. No amount is too small! Please follow the link below and share with your friends and family on how a tax-deductible donation can be made.
https://fabry.org/donate/
Mail a check to:
FSIG
108 NE 2nd St
PO Box 510
Concordia, MO 64020
Support FSIG
11/28/2022
Support Fabry Support & Information Group by shopping at AmazonSmile.
If you've already prepared your shopping list for Cyber Monday this is for you. The deals and deep discounts start tomorrow and it's an easy way to support FSIG programs.
AmazonSmile will donate a portion of eligible purchases to organizations like FSIG, every single time you shop!
Get started with these 3 simple steps:
1. Visit Smile.Amazon.com
2. Designate "Fabry Support & Information Group" as your charity of choice - you'll only have to do it once!
3. Shop!
https://smile.amazon.com/ch/43-1890134
When you shop at AmazonSmile, Amazon will donate to Fabry Support & Information Group. Support us every time you shop.
11/23/2022
Happy Wednesday!
11/16/2022
Happy Wednesday!
11/15/2022
Please consider attending today's Third Annual Coverage and Access Policy Forum by UCA starting at 1:00 PM (Eastern). We will here from several Congressional members and State Representatives from across the country as well as community members.
Join here:
https://haea.zoom.us/j/86866600005
11/12/2022
11/12/2022
11/09/2022
Happy Wednesday!
11/05/2022
The Truth About Growing Up With Fabry Disease
The Truth About Growing Up With Fabry Disease
I am just trying to be as honest as possible... Growing up having this disease has been pretty rough.
11/04/2022
The Truth About Growing Up With Fabry Disease
The Truth About Growing Up With Fabry Disease
I am just trying to be as honest as possible... Growing up having this disease has been pretty rough.
11/04/2022
Happy Friday!
11/03/2022
You’re invited to the UCA Coverage and Access Forum!
Tune into the 2022 Coverage and Access Forum on November 15th from 1:00 PM ET - 3:30 PM ET!
Hear what we are doing to protect your access to medicines and how you can get involved!
Watch the webinar here: https://haea.zoom.us/j/86866600005
We look forward to seeing you there!
10/26/2022
Happy Wednesday!
10/25/2022
Tomorrow is the last day to RSVP for the Houston Fabry Get Together! Email us at [email protected].
10/25/2022
Tomorrow is the last day to RSVP for Dallas/Ft Worth Fabry Get Together! Email us at [email protected].
10/25/2022
AllStripes is on a mission to unlock new treatments for people affected by rare disease, including Fabry disease. Learn more about AllStripes and how you can help contribute to research through the Fabry disease research program! Learn more here allstripes.com/fabry
10/21/2022
Rethink Fabry Feels: Your Mental Health Matters
Tuesday, October 25, 2022
8:00-9:00 pm ET
Register Here: https://rethinkfabry.com/webinar-registration
In this webinar moderated by Dr. Kendra J. Bjoraker, Maurice and Reina (Maurice's wife) share their emotional journey with Fabry disease, discuss how caregivers can provide emotional support (and why they themselves need support), and explain why caring for your mental health should be a priority.
10/19/2022
10/19/2022
Happy Wednesday!
10/17/2022
Only one week left to RSVP for the Dallas/Ft Worth meeting with Dr. McNutt. Please email [email protected]. All people with Fabry and their families are invited!
10/17/2022
Only one week left to RSVP for the Houston meeting with Dr. Ray. Please email [email protected]. All people with Fabry and their families are invited!
10/11/2022
The Houston meeting will be on October 29th at the Maggiano's Houston Post Oak Blvd. Please join FSIG and Dr. Joseph Ray for lunch and a Fabry discussion. RSVP to [email protected].
10/11/2022
Join FSIG and Dr. McNutt in Dallas/Ft Worth, Texas on Sunday, October 30th. Please RSVP to [email protected].
10/05/2022
Happy Wednesday!
10/04/2022
The Houston meeting will be on October 29th at the Maggiano's Houston Post Oak Blvd. Please join FSIG and Dr. Joseph Ray for lunch and a Fabry discussion. RSVP to [email protected].
09/28/2022
Happy Wednesday!
09/21/2022
Happy Wednesday!
09/19/2022
Patient-Focused Drug Development Meeting on Fabry Disease
Patient-Focused Drug Development Meeting on Fabry Disease happening now!
https://youtu.be/_UwiLahp1Xk
An exciting initiative by the National Kidney Foundation and Fabry Support & Information Group to inform the FDA about the patient perspectives of living wit...
09/13/2022
Global Genes Rare Patient Advocacy week! It was wonderful to see Wojciech all the way from Poland. He’s a Fabry patient advocate and doing great things in advocacy.
09/11/2022
Check out the interview with David Feldman regarding their collaboration with FSIG hosting a Patient Focused Drug Development meeting where FDA representatives and pharmaceutical partners will listen to Fabry patients and families!
We can’t stress enough about how important this is for the community to shore up! This will be a virtual meeting on Monday, September 19th at 10am ET. Register at https://www.kidney.org/content/externally-led-patient-focused-drug-development-el-pfdd-meeting-fabry-disease.
You can see the entire interview at https://fabry.org/wp-content/uploads/2022/09/NKF-FSIG-PFDD_low.mp4
09/07/2022
Happy Wednesday!
08/31/2022
Happy Wednesday!
08/30/2022
It only takes 15-20 minutes to sign up for an AllStripes research program and consent to research. Your medical journey can help with a wide range of research efforts. Learn more here: allstripes.com/Fabry
08/29/2022
This program will be hosted by Dr. Anjay Rastogi and the CORE Kidney Health Team.
The panelist will include patient advocates, dietitians, psychologists, other physicians and specialists, other healthcare providers and many more. will be an interactive session with an opportunity to ask questions during the event. You can also send your questions, prior to the event, via email.
Please join this Thursday for these very useful, FREE educational programs. Register at tinyurl.com/rastogi-chat
08/25/2022
Celebrate our advocates! Make sure to tune in TONIGHT to the to honor the incredibly resilient advocates in the community and recognize those who have worked tirelessly to shine a light on the those affected by rare diseases. Who inspires you to take up the torch? Join the conversation: https://bit.ly/TORCH2022
08/24/2022
If you live in or near Greenville, SC, you are invited to a Fabry Get Together.
Saturday, September 17th
11:30 AM
Courtyard Marriott Downtown
Address
108 NE 2nd Street
Concordia, MO
64020
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Videos
Check out the interview with @nationalkidneyfoundation David Feldman regarding their collaboration with FSIG hosting a Patient Focused Drug Development meeting where FDA representatives and pharmaceutical partners will listen to Fabry patients and families! We can’t stress enough about how important this is for the #Fabry community to shore up! This will be a virtual meeting on Monday, September 19th at 10am ET. Register at https://www.kidney.org/content/externally-led-patient-focused-drug-development-el-pfdd-meeting-fabry-disease. You can see the entire interview at https://fabry.org/wp-content/uploads/2022/09/NKF-FSIG-PFDD_low.mp4
It only takes 15-20 minutes to sign up for an AllStripes research program and consent to research. Your medical journey can help with a wide range of research efforts. Learn more here: allstripes.com/Fabry
2021 FEFC
Meet Bryan Long, Fabry Patient Stories
Energy Boost with Judson Laipply at this year's annual virtual conference!
2020 FSIG Expert Fabry Conference
Introduction Video for Backpack Health
Backpack Health makes it easy for individuals to manage, own and share health information for themselves and their families. Take a minute and watch this short video to see how to bring all your health information together and easily share it with everyone involved with your care.
Category
Nearby government services
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S Main Street
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64020
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S Main Street
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Concordia Area Chamber of Commerce
S Gordon Street -
Pioneer Trails Regional Planning Commission
S Gordon Street -
Main Street, Alma
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N Miller Street, Sweet Springs
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S Miller Street, Sweet Springs
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Corder 64021
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East Marshall, Sweet Springs
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West 31 Street Street, Higginsville
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Higginsville Police Department
W 19th Street, Higginsville -
Cons Public Water Supply Dist No 2 of Lafayet
Walnut Street, Higginsville -
Lafayette County Enterprises, Inc.
W 19th Street, Higginsville -
Higginsville Fire Protection District
W 19th Street, Higginsville
Other Concordia government services
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Pioneer Trails Regional Planning Commission
S Gordon Street -
S Main Street
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S Main Street
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Concordia Area Chamber of Commerce
S Gordon Street -
64020
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!
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! 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)
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
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!