A crowdfunding campaign aims to raise $45,000 to support “Rare,” a documentary film featuring the struggles and achievements of people living with rare diseases and their families. Sweis Entertainment and Digital Cave Media launched the campaign — allowing filmmakers to finish producing and to release the documentary — on Kickstarter.
People with a familial history of short telomere syndrome (STS) — a disorder involving shortened telomeres, or chromosome “caps” — may be at an increased risk of developing pulmonary fibrosis, even if they themselves do not have the mutation that causes STS, a new study highlights. “This has…
“But if these years have taught me anything it is this: you can never run away. Not ever. The only way out is in.” — Junot Díaz I have always been a social person. I need human contact and I have always enjoyed spending time with family and friends,…
Long-term exposure to air pollutants — nitrogen dioxide, ozone, and fine particle matter — appears to greatly raise the risk of acute exacerbations, or sudden bouts of symptom worsening, in people with idiopathic pulmonary fibrosis (IPF), a study of patients in Greece reported. “Our findings show consistent positive associations” between…
Certain genetic variants appear to lead to better survival in people with idiopathic pulmonary fibrosis (IPF) who are on anti-fibrotics, suggesting that genetic testing may help to select patients for specific treatments, a real-world study found. Specifically, people carrying a variant of the DSP gene, known as the rs2076295…
A new U.S. initiative called Rare Disease Cures Accelerator–Data and Analytics Platform — dubbed RDCA–DAP — aims to accelerate treatment innovation across rare diseases by sharing existing patient data and promoting the standardization of new data collection. Launched during a virtual workshop in September, the U.S. Food and Drug…
GED-0507, Nogra Pharma’s experimental therapy, significantly reduced the levels of pro-inflammatory and pro-scarring molecules, while suppressing the maturation of myofibroblasts — the main drivers of lung scarring (fibrosis) — to a similar or greater extent as two approved anti-fibrotic therapies. These findings, based on data from mice with induced…
Photo courtesy of Aishia Burnett Day 30 of 30 This is Aishia Burnett’s story: January 2015: Picture it: I was working full time, going to school part time, a mom to two high schoolers, happily married to my best friend. I got pneumonia and my doctor sent me for…
Friendships can change when chronic illnesses like idiopathic pulmonary fibrosis (IPF) enter the picture. Some might struggle to understand a friend’s illness, needs, and limitations. And the friend with the illness might change too, depending on how they cope. However, I believe true friendships can withstand these challenges, and even…
Photo courtesy of Emma Schmitz Day 29 of 30 This is Emma Schmitz’s story: I hadn’t planned on being a caregiver for my mom in my 20s, but it felt like the least I could do after the support she and my dad have given me throughout my life.
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