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Global Lung Health Organizations Partner for Inaugural World Bronchiectasis Day

Leading patient advocacy organizations and professional societies combine efforts to raise awareness of bronchiectasis and its increased prevalence worldwide

Global lung health organizations, including the US COPD Coalition, have joined together to announce the declaration of World Bronchiectasis Day on July 1, 2022, to raise awareness of bronchiectasis and its increased prevalence in many countries.

Bronchiectasis is a lung disease that affects hundreds of thousands of people worldwide. It is characterized by enlarged or scarred airways that cannot clear mucus properly, resulting in recurring lung infections. Bronchiectasis creates a significant burden on patients and their families. It can lead to accelerated lung function loss resulting in long-term disability and premature death. The disease can occur at any age, though most people are diagnosed later in life. Although there is currently no cure, detecting and treating bronchiectasis early can improve quality of life and may impact the longevity of those affected. While bronchiectasis is often referred to as a rare disease, prevalence is increasing globally.

“By supporting World Bronchiectasis Day, global partners are committed to addressing the critical unmet needs of the bronchiectasis lung disease community,” said Ruth Tal-Singer, PhD, COPD Foundation President & Chief Scientific Officer.

World Bronchiectasis Day is being organized by an international planning committee co-chaired by Tim Aksamit, MD, Medical Director, Bronchiectasis and NTM 360 at the COPD Foundation, and Professor James Chalmers, EMBARC Chair and British Lung Foundation Chair of Respiratory Research, University of Dundee. Representatives from global patient advocacy organizations and professional societies serve on the organizing committee.

“Bronchiectasis has been a neglected disease, and the lack of awareness causes difficulties and distress to many patients,” said Professor James Chalmers. “We have made great advances in the past 10 years, but there is a lot more to do in research and in raising awareness of the condition. We are supporting World Bronchiectasis Day as part of our ongoing commitment with global partners to tackle this neglected disease.”

Lynn Schnapp, MD, president of the American Thoracic Society, added: “Currently, in about 40 percent of cases, the cause of bronchiectasis is unknown. That is 40 percent too many. Our patients deserve better. By partnering with other global societies, it is our intention to amplify awareness around this disease to improve the lives of patients worldwide.”

“We are motivated to work with other leading global lung health organizations as part of World Bronchiectasis Day to increase awareness about bronchiectasis worldwide,” said associate professor Lucy Morgan, Board Chair, Lung Foundation Australia, and chair of the Australian Bronchiectasis Registry. “We’re also committed to further understanding the impact of bronchiectasis on adults and children in Australia while striving to improve their quality of life and equitable access to evidence-based therapies,” she added.

Watch these first-hand stories of people and families living with bronchiectasis. Visit the European Lung Foundation.

To learn more about bronchiectasis, events leading up to and on July 1, a list of collaborating organizations, and information about supporting the annual World Bronchiectasis Day, visit worldbronchiectasisday.org.

About World Bronchiectasis Day
World Bronchiectasis Day, July 1, 2022, aims to raise global awareness of bronchiectasis and help those with the disease and others yet to be diagnosed through education, advocacy, and a global conversation focused on reducing the burden of bronchiectasis for patients and their families worldwide. Learn more by visiting worldbronchiectasisday.org.

Support for Caregivers Means Better Care for  Loved Ones with COPD

Providing care for a loved one is an important role, but also comes with challenges. Respiratory Health Association (RHA) created the COPD Caregiver’s Toolkit in 2017 to support informal caregivers of people living with COPD. This educational resource provides caregivers the tools and guidance they need in their role as caregiver, while also protecting their own health. Early support from the National Heart, Lung, and Blood Institute’s (NHLBI) Learn More Breathe Better® program enabled RHA to study the acceptability and usability of this tool. Findings from this study showed that caregivers found the Toolkit to be useful in navigating the multiple roles of caring for someone living with COPD.

Because of this positive response to Toolkit, NHLBI recently partnered with RHA to create a digital form of the Toolkit in hopes of providing greater support to caregivers across the country. The digital form of the Toolkit contains the same information provided in the hard copy resource, separated into online modules on an NHLBI webpage. These modules cover a variety of topics such as how to prepare for doctors’ appointments, navigate changes in home life, provide help after a COPD flare-up or hospital stay, and more. Medication and vaccination tracking sheets and a list of questions to ask doctors are also available for download on the webpage.

RHA is partnering with Vitalograph, a global leader in respiratory diagnostics, to host a Q&A webinar with RHA President & CEO Joel Africk and Dr. Khalilah Gates, a pulmonologist at Northwestern Hospital. They will introduce and discuss the new digital toolkit, the importance of caregiving, and the role family caregivers have in managing a COPD diagnosis.  You can register for this free webinar by clicking on the button below.

Click here to read a brief message from NHLBI’s Dr. James Kiley and RHA’s Joel Africk about the COPD Caregiver’s Toolkit.

US COPD Coalition Calendar

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