My Pulmonologist’s Retirement Leaves Me With Mixed Emotions

Rare Disease Diversity Coalition Awards $600K to Combat Disparities

The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions. The five…

RXC007 for IPF Showing Favorable Safety in Ongoing Phase 1 Trial

RXC007, an investigational oral therapy for idiopathic pulmonary fibrosis (IPF), is showing favorable safety and pharmacological properties in an ongoing Phase 1 trial in healthy volunteers. The experimental therapy being developed by Redx Pharma works by blocking the activity of ROCK2, a protein involved in a signaling cascade that…

Why I’ve Used Multiple Models to Track My IPF Progression

When I learned that the prognosis for idiopathic pulmonary fibrosis (IPF) patients is about five years after diagnosis, I started wondering how my disease would progress. I didn’t think my progression would follow the usual, defined stages. I believed I would have an acute exacerbation and go directly from diagnosis…

‘Rare’ Documentary in Kickstarter Campaign to Raise $45K by Oct. 28

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.

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