A (VIRTUAL) DAY OF RECOGNITION FOR THE CHRONIC AND RARE DISEASE COMMUNITY

Countless events have been canceled over the past few months due to COVID-19; however, Chronic Disease Day will still take place on July 10 at 12 p.m. ET nationwide, bringing together patient advocacy organizations, nonprofits, communities and government bodies to raise support for those with chronic illnesses. While it will take place virtually, this special day will still recognize and raise awareness for those living with chronic or rare illnesses.

To watch the webinar livestream, visit this link at 12 p.m. ET. There will also be a 30-minute advocacy training livestream featuring our Director of Government Relations Jim Romano at 2 p.m. ET using the same link.

The keynote address will be delivered by Dr. Eliseo J. Perez-Stable, director of the National Institute on Minority Health and Health Disparities.

Additional presentations at the event will include: Rep. Joseph Kennedy; Rep. Van Taylor; Clorinda Walley, president of Good Days; Tony Castaldo, president of the US Hereditary Angioedema Association; Katie Kroner, senior director of advocacy and treatment access at Pulmonary Hypertension Association; Chris Draft, former NFL star and founder of the Chris Draft Family Foundation; and Hannah Olson, founder of Chronically Capable.

The date of July 10 is significant. In the U.S., seven out of the 10 top causes of death stem from chronic diseases and kills more than 1.7 million Americans every year. Additionally, 133 million Americans have at least one chronic disease, and by 2025, it is estimated that 164 million Americans will be affected by chronic diseases. Continuing, chronic conditions account for 81% of hospital admissions and more than 90% of our annual healthcare spending.

While some of these chronic and rare conditions are either inherited or lifelong, many are preventable, such as heart disease. This is why Chronic Disease Day is so vital – to spread awareness and resources for these conditions.

Chronic Disease Day is also important for those with nonpreventable illnesses. Many of these are also considered “invisible illnesses,” meaning they are not recognizable with a naked eye. This affects each patient differently. Many times, people have difficulty explaining their diagnosis to others or even being believed. Place all of this on top of the devastating health-related, financial and social effects of these conditions, and it is easy to see why promoting awareness for the chronic illness community is urgent and necessary.

Access to medical care is also a burden for many of those who are chronically ill, as medicine and treatment can be tens of thousands of dollars per year. Organizations such as PSI provide financial relief to those diagnosed with chronic and rare diseases, and it is critical to raise awareness for these resources. 

To get involved, feel free to share your story, whether it be on social media or anywhere else. You can also persuade your state to recognize Chronic Disease Day by filling out a simple form.

Be the change. Help spread patient stories, information and resources to assist in lowering the rates of chronic disease, as well as inform the public on the reality of rare diseases. Together, we can support the chronic and rare disease community.

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Phone: 1-800-366-7741