The glam and glitzy affair that is Broadway Belts for PFF! is set for March 7 in New York City. And for the first time, supporters can experience the event interactively from home. The 12th annual event — the single largest fundraiser for the Pulmonary Fibrosis Foundation (PFF) —…
The University of Calgary is developing a clinical tool to help identify the environmental and occupational risks of pulmonary fibrosis (PF), an undertaking that could lead to a deeper understanding of how the disease takes hold and aid in developing treatments. During the 18-month project, supported by the Three…
A lyric-writing challenge has culminated in a new song, “Breath of Life (Para Don Berna),” that is being debuted by “American Idol” winner Jordin Sparks and New York Yankees veteran and Latin Grammy nominee Bernie Williams to increase awareness and promote the early diagnosis of idiopathic pulmonary fibrosis (IPF).
Julie Halston, a Broadway theater veteran and comedian, has received the 2020 Isabelle Stevenson Tony Award for her longtime volunteer efforts for the Pulmonary Fibrosis Foundation (PFF). Halston, who is part of the PFF board, has raised more than $2 million for the organization. She also helped to bring…
For Pulmonary Fibrosis Awareness Month, held each September, the biopharmaceutical company Boehringer Ingelheim Canada has created the Life with PF campaign to help patients better understand the stages of this progressive disease and to empower them to obtain much-needed care. The initiative, which is aimed at…
Aiming to get people at risk for lung disorders more quickly diagnosed and treated, nine patient organizations — including the Pulmonary Fibrosis Foundation (PFF) — are collaborating to present the first Interstitial Lung Disease (ILD) Day, to be held Wednesday, Sept. 15. The goal of the daylong observance is…
With an emphasis on research and how well patients are living, the Pulmonary Fibrosis Foundation’s (PFF) PFF Summit 2021 is set to take place virtually Nov. 8–13. The global biennial pulmonary fibrosis (PF) conference, which is sponsored in part by Boehringer Ingelheim, will offer live, interactive educational…
At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…
To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…
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