Fabry Support & Information Group

Fabry Support & Information Group Founded in 1996, this group was created by Fabry patients to share information with others suffering
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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

Happy Wednesday!
12/20/2023

Happy Wednesday!

We thought the Fabry community would be interested in the work and awareness that Dr. Anjay Rastogi with UCLA is doing. ...
12/01/2023

We thought the Fabry community would be interested in the work and awareness that Dr. Anjay Rastogi with UCLA is doing.

UCLA CORE Kidney announces their participation in the 135th annual Rose Parade, where CORE Kidney will have their inaugural Rose Parade float, A Gift of Life: A Tune That Never Fades! on January 1st, 2024, in Pasadena, California. The mission of this float is to honor living kidney donors by increasing KIDNEY HEALTH awareness – a huge unmet need!

The world-famous Rose Parade has a large audience of 700,000 plus live spectators and 50 plus million online viewers from all over the world and will be having its 135th iteration in 2024. This KIDNEY float will include living kidney donors, kidney recipients, kidney patients, caregivers, patient advocates and much more. There is a lot of symbolism in the float itself which will be highlighted during the viewing. There is not a better platform to deliver a positive message then on January 1st when people make resolutions including ones related to health. Let’s make 2024 KIDNEY HEALTH Awareness Year! Let’s disrupt the norm!

A Gift of Life : A Tune that never fades

Honoring Living Kidney Donors…

Friday, Dec. 1st | 5 – 6 pm (PST)

https://urldefense.com/v3/__https:/tinyurl.com/rastogi-chat__;!!F9wkZZsI-LA!T4XiV54KaeNvgj38Wcz6oX-uCsz4bYpaQpogy-5EOSa8y1DzH2Qe3yUPNJDfFRLLRUWxit_hXg$

11/30/2023

Good News!

Yesterday uniQure announced FDA clearance of their investigational new drug AMT-191 Gene Therapy for Fabry Disease. Patient enrollment is expected to begin in the first half of 2024.

Read more here:

uniQure N.V. today announced that the U.S. Food and Drug Administration (FDA) has cleared the Investigational New Drug (IND) application for AMT-191, the Company’s gene therapy candidate for Fabry disease.

Happy Wednesday!
11/29/2023

Happy Wednesday!

On this universal day of giving, we ask for your continued support of those people living with Fabry disease. Help us in...
11/28/2023

On this universal day of giving, we ask for your continued support of those people living with Fabry disease. Help us in the fight to bring better treatments and education for all those who live with this progressive rare disease. https://fabry.org/donate/

  is November 28th, the day when people come together to celebrate generosity and make an impact! Your impact will be do...
11/16/2023

is November 28th, the day when people come together to celebrate generosity and make an impact! Your impact will be doubled with the 5K Challenge. Please consider making a donation to help us help the Fabry community. Your donation is tax deductible. Any amount you can donate will 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 St., PO Box 510, Concordia, MO 64020.

Tomorrow is the last day to RSVP for Salt Lake City! This Saturday, November 11th, the meeting will begin at 11:30am. Dr...
11/07/2023

Tomorrow is the last day to RSVP for Salt Lake City! This Saturday, November 11th, the meeting will begin at 11:30am. Dr. Kristin Scott-Tillery, a cardiologist from Billings, MT, will be speaking. Please RSVP here:

FSIG in Salt Lake City, UT

Happy Wednesday!
11/01/2023

Happy Wednesday!

Do you live in Salt Lake City or the surrounding areas? FSIG is having a Fabry Get Together on November 11th at 11:30am....
10/20/2023

Do you live in Salt Lake City or the surrounding areas? FSIG is having a Fabry Get Together on November 11th at 11:30am. Dr. Kristin Scott-Tillery, a cardiologist from Billings, MT, will be speaking. Please RSVP here: https://fabry.org/events/fsig-in-salt-lake-city-ut/

10/18/2023

Join us for the webinar on Gene Therapy with Dr Hughes on November 13th at 6.30pm CET.

Register in advance for this meeting via the link in the bio.

After registering, you will receive a confirmation email containing information about joining the meeting.

We hope to see you there!

If you are interested, the UCLA CORE Kidney Monthly Chat is having a special edition called, "Surviving and Thriving in ...
10/18/2023

If you are interested, the UCLA CORE Kidney Monthly Chat is having a special edition called, "Surviving and Thriving in the ‘Tripledemic’: What You Need to Know to Protect Yourself from COVID, Influenza, and RSV"

Today at 8 pm (EST), 7 pm (CST) 6 pm (MST) 5 pm (PST)

Register here:
https://uclahs.zoom.us/webinar/register/WN_oNqDUVPFSc2BYBfUpMvZEA
UCLA Health

Protalix Biotherapeutics put out a press release about the events in Israel over the weekend."The Protalix family is hor...
10/11/2023

Protalix Biotherapeutics put out a press release about the events in Israel over the weekend.

"The Protalix family is horrified by the unconscionable events in Israel over the past weekend which are currently ongoing and the scope of which is yet to be determined. On a personal level, we are heartbroken and pray for the victims as well as their families, friends and other loved ones. At Protalix, we are dedicated to helping our own families, friends and colleagues cope with this devastating situation and to provide them with any support they need.

At the same time, we wish to reaffirm our employees, partners and stockholders that Protalix's operations have not been adversely affected by this situation despite our personal grieving. Hostilities have not taken place where Protalix's facilities are located and we do not anticipate any disruption to the supply of Elfabrio® or Elelyso®. We thank all of our partners and stockholders that have reached out to express their support and best wishes, and are grateful for their continued confidence in Protalix."

https://protalixbiotherapeutics.gcs-web.com/node/13746/pdf

10/03/2023

NEW! Ruling on Copay Assistance Accumulators

In a major victory for patients who depend on prescription drugs, Judge John D. Bates of the U.S. District Court for the District of Columbia struck down a federal rule that allowed health insurers to not count drug manufacturer copay assistance towards a beneficiary’s out-of-pocket costs.

* FSIG is one of the 29 organizations that signed onto the Amicus Brief in support of this litigation.

Read more here:https://fabry.org/wp-content/uploads/2023/10/Court-Strikes-Down-HHS-Rule-that-Allowed-Insurers-to-Not-Count-Copay-Assistance.pdf

Tonight! UCLA's next CHAT will be on Kidney Transplantation.  There will be an expert panel comprising of transplant nep...
10/01/2023

Tonight! UCLA's next CHAT will be on Kidney Transplantation. There will be an expert panel comprising of transplant nephrologists, coordinators and kidney recipients to answer any questions you might have. Please do attend and if possible, please send your questions in advance so we can answer them during the presentation.
UCLA Health CORE Kidney Monthly CHAT Presents:
Kidney Transplant - Ask the Experts!
Sunday, October 1st | 5 – 6 pm (PST)
https://uclahs.zoom.us/webinar/register/WN_GxLIlyDwSmmDssQCvBL0Xw

UCLA's next CHAT will be on Kidney Transplantation.  There will be an expert panel comprising of transplant nephrologist...
09/26/2023

UCLA's next CHAT will be on Kidney Transplantation. There will be an expert panel comprising of transplant nephrologists, coordinators and kidney recipients to answer any questions you might have. Please do attend and if possible, please send your questions in advance so we can answer them during the presentation.

UCLA Health CORE Kidney Monthly CHAT Presents:
Kidney Transplant - Ask the Experts!
Sunday, October 1st | 5 – 6 pm (PST)
https://uclahs.zoom.us/webinar/register/WN_GxLIlyDwSmmDssQCvBL0Xw #/registration

FSIG is excited to host a Fabry Get Together in Chicago, Illinois on October 28th with Dr. Kendra Bjoraker. RSVP here: h...
09/26/2023

FSIG is excited to host a Fabry Get Together in Chicago, Illinois on October 28th with Dr. Kendra Bjoraker. RSVP here: https://fabry.org/events/fsig-in-chicago/

FSIG is delighted to host a Chicago Fabry Get Together. If you live in the area or surrounding areas and are able to attend the luncheon, please RSVP by October 11th.

Happy Wednesday!
09/20/2023

Happy Wednesday!

JUST 3 MORE NEEDED!If you love our work then tell the world! Stories about us from people like you will help us make an ...
09/13/2023

JUST 3 MORE NEEDED!
If you love our work then tell the world! Stories about us from people like you will help us make an even bigger impact in our community. GreatNonprofits – the #1 source of nonprofit stories and feedback – is honoring highly regarded nonprofits with their 2023 Top-Rated List. Won’t you help us raise visibility for our work by posting a brief story of your experience with us? All content will be visible to potential donors and volunteers. It’s easy and only takes 3 minutes! Go here to get started!

Submit your rating and write a review for Fabry Support Information Group. Share your experience and help others learn about this Concordia nonprofit organization!

09/01/2023

Every September, we celebrate and raise awareness for newborn screening (NBS) in the United States and the impact it has had on millions of families. Each year, approximately four million babies are screened for serious disorders that are present at birth!

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