Editor's Note: This article was originally written and shared with us by Caleigh Haber. This day hits really close to home for me. I was born with Cystic Fibrosis in…
When he was just three years old, Florida State Seminoles outfielder Jaime Ferrer was diagnosed with type 1 diabetes, a chronic condition where the pancreas makes little to no insulin.…
Ronald Acuña Jr. is a professional baseball player with the Atlanta Braves. The powerhouse player is known for being an NL MVP and for becoming the first player in Major…
Adults with CF Who Received a Late Diagnosis Online Support Group December 6, 2023 at 8 PM Online support group for adults with CF who received a late diagnosis.…
Historically, drug development within the rare disease space has been stifled; companies tend to focus on developing therapies for bigger patient populations that will be more impactful and more…
Adults with CF Who Received a Late Diagnosis Online Support Group November 1, 2023 at 8 PM Online support group for adults with CF who received a late diagnosis.…
Adults with CF Who Received a Late Diagnosis Online Support Group October 4, 2023 at 8 PM Online support group for adults with CF who received a late diagnosis.…
Adults with CF Who Received a Late Diagnosis Online Support Group September 6, 2023 at 8 PM Online support group for adults with CF who received a late diagnosis.…
Findings from the Max Delbrück Center and the Charité Universitätsmedizin Berlin have been published in the European Respiratory Journal stating that a triple combination therapy can improve CF symptoms…
According to a story from European Pharmaceutical Review, the European Commission has recently approved a label extension of ORKAMBI (lumacaftor/ivacaftor), a drug used to treat cystic fibrosis. Under the extension,…
“Three years ago, my lung function was 11% and I was hours from death, then I received the gift of life – which was Trikafta.” These are the words of…
There is no cure for cystic fibrosis. That is the reason the Cystic Fibrosis Research Institute (CFRI) is very vocal and makes it clear that cooperation is needed from the…
Children with cystic fibrosis (CF) born between 1995 and 1999 had an estimated life expectancy of 32 years. Advances in both research and treatment have contributed to increased life…
In 2020, the U.S. FDA granted Orphan Drug designation to KB407, an investigational gene therapy for patients with cystic fibrosis (CF). More recently, at the start of 2023, the…
In recent years, treatment options for cystic fibrosis, a rare disease, have increased significantly in number and in effectiveness. However, many of the most effective treatments, developed by Vertex Pharmaceuticals,…
CFRI's 35th Virtual National CF Education Conference: Focus on the Future July 29-31, 2022 CFRI’s National CF Education Conference brings together the national and international cystic fibrosis community for a…
Online Support Group for Teens with CF July 20th, 2022 This monthly group addresses the unique issues faced by teenagers between the ages of 13 and 18 growing up with…
Post-Transplant Support Group for Adults with CF July 27, 2022 This support group addresses the unique issues faced by those with CF who have received a double lung transplant and…
CF Caregivers Support Groups July 19, 2022 CFRI provides a monthly CF Caregivers Support Group, which is open to participants nationwide. The groups are facilitated by a social worker well versed…
Navigating Grief to Growth: Bereavement Support Group July 19th, 2022 A discussion and support group for those who have lost a loved one to CF, whether recently or in the…
Online Support Group for Adults with CF July 18th, 2022 CFRI provides a monthly Online Support Group for Adults with CF, which is open to participants nationwide. The group is facilitated by a…
Virtual Support Group for the Spanish-Speaking CF Community July 13th, 2022 This monthly group meets on the second Wednesday of every month and addresses the unique issues faced by Hispanic/Latinx…
Navigating Grief to Growth: Bereavement Support Group July 5th, 2022 A discussion and support group for those who have lost a loved one to CF, whether recently or in the…
Many of us are familiar with the famous story written by Roald Dahl titled Charlie and the Chocolate Factory; we know the tale of the golden ticket and Charlie's journey to…
Cervical dysplasia, a precancerous condition, is defined as "the abnormal growth of cells on the surface of the cervix." While it does not typically cause symptoms, it does lead to…
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