Author Archives: Mary Chapman

‘Rose Up’ Virtual Event Raises Funds, Awareness

Cystic fibrosis (CF) patients, caregivers and supporters are invited to participate in Rose Up, a Sept. 17 virtual event aimed at uniting the CF community and raising awareness and funds to help find a cure. The hope is that the Cystic Fibrosis Foundation (CFF) effort, now in its…

CF Canada Urges Adoption of New Care Guidelines, Access to Trikafta

Cystic Fibrosis Canada (CFC) is calling on provinces and territories across the country to adopt the latest standardized care guidelines and speed patient access to Trikafta, a triple-combination and “highly impactful” disease-modifying therapy for almost all with cystic fibrosis (CF). The guidelines, “Initiation, Monitoring and…

Student Appointed to Ohio Rare Disease Advisory Council

Andrea Hoffman, an Ohio Northern University (ONU) student who also is a cystic fibrosis (CF) patient and advocate, has been appointed by Ohio Gov. Mike DeWine to the Ohio Rare Disease Advisory Council, according to a university press release. In her two-year term, Hoffman, an ONU junior, will…

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

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…

Get Ready for NORD’s Patient and Family Forum, Set for June 26-27

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,…

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…


Featured Column

The Benefits of Being Sick

A banner for Lara's column, depicting a car on a road trip winding through a forest.
As columnist Lara Govendo reflects on her journey through CF and transplant, she realizes there are a surprising number of benefits.

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