by ibp-editors | Mar 8, 2023 | Uncategorized
On February 14, 2023, FCS patient Giuliana & FCS Foundation Co-President, Melissa Goetz & Congressman Tonko celebrated the HEART Act legislation passing in December 2022. We are thrilled to share news of a significant breakthrough in the fight against familial...
by ibp-editors | Mar 6, 2023 | FCS News
Check out this informational webinar on Living with FCS, Genetic Testing and Genetic...
by ibp-editors | Aug 3, 2022 | FCS News
Sign up for the 3rd Annual Virtual Fun Run to raise awareness for those living with FCS. To celebrate the progress of the HEART Act (hyperlink), the virtual race will take place on The Mall in Washington, DC! Registration Link Here Date of Virtual Run: September...
by Qingyang Li | Jul 29, 2022 | The Heart Act
The purpose of the HEART Act S. 4348 is to support and improve the review of drugs to treat rare diseases and conditions. Learn more about it...
by Qingyang Li | Mar 6, 2022 | CURE!
ARO-APOC3 is an investigational therapeutic being evaluated by Arrowhead Pharmaceuticals, Inc. forthe treatment of FCS. A Phase 3 clinical trial, the AROAPOC3-3001 Palisade Study is currently recruitingadults with a clinical diagnosis of FCS at multiple research...
by Qingyang Li | Dec 2, 2020 | FCS News
During the latest FCS patient-caregiver virtual meeting (link) hosted by the FCS Foundation, Ionis introduced the BALANCE study to the meeting attendance. Today, Ionis officially announced the initiation of the global Phase 3 BALANCE study via a press release (link)....
by Qingyang Li | Jul 19, 2020 | FCS News
CNN interviewed FCS Foundation’s co-presidents Melissa and Lindsey about the #TheHeartAct2020. It was an honor to share our journey with them. The FCS community is so proud to support this legislation and work alongside so many #raredisease groups, including the...
by Melissa | Sep 20, 2017 | Patient Stories
To My Younger Self After My Daughter’s Rare Disease Diagnosis Dear Melissa, Well, this isn’t what you were expecting. Your mind is racing, you feel numb and you’re in shock. It’s OK. It’s all OK. Because here’s the thing: You’re going to feel a lot of things over the...
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