Most people have probably heard the saying, “change your thoughts, change your life.” There is great truth to this because how we think can significantly impact our mental and physical…
How one deals with adversity is very unique to the situation and the individual. I have faced great adversity at different times in my life, some of which I handled…
Anxiety is the apprehension, uncertainty, and fear one feels when anticipating a threatening event or situation, whether the threat is real or imagined. It is often accompanied by restlessness, problems…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
This year, the National Organization for Rare Disorders (NORD) held its annual Breakthrough Summit from October 16-17 in Washington, D.C. During the Breakthrough Summit, NORD celebrated its 40th anniversary and…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
When it comes to the rare disease landscape, there is not enough conversation discussing mental health needs. People undoubtedly need more mental health support and resources during the diagnostic odyssey.…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
In an article for WebMD, Marilyn Gentile discusses her experience with age-related macular degeneration. She had cataract surgery at 70 years old and just days later she had a central…
STAT NEWS recently published an op-ed with a provocative question: How do we tell the difference between legitimate mental health tech and snake oil? Looking back to the early…
Being diagnosed with a rare or chronic illness can come with a heavy emotional and psychological burden. When you first receive a diagnosis, you might be wondering what it…
We have been living in the midst of a pandemic for years now, and with that has come a number of lasting effects. One of these effects, which has been…
According to a recent article, mental health affects the physical body in a number of ways, and it’s important to recognize and understand this connection. Mental health has such a…
Patient Worthy signed up to cover several sessions at the Huntington's Disease Society of America's (HDSA) 36th Annual Convention, which was held virtually this year. This event features informative presentations…
When a patient is told that they have a life-threatening rare disease and then told that there is no cure, every effort is made to attend to their physical needs.…
by Lauren Taylor from In The Cloud Copy COVID-19 has now been wreaking havoc on our country and world for months, with little end in sight. It came very quickly…
by Lauren Taylor from In The Cloud Copy As the world continues to watch the effects of COVID-19 sweep around the world, many worry about getting infected. A study from…
This was originally published as the Seventh Newsletter for the Leukodystrophy Resource Research Organisation (LRRO) on April 19th 2020. You can read more from their newsletter here. To state the blatantly…
As we live through the Great Quarantine of 2020, online therapy may be piquing your interest. The world is in a time of uncertainty, which is psychologically stressful (and isolating),…
When you have a rare disease, you know that the way it effects your life goes far beyond the symptoms listed on WebMd. It riddles through plans for weekend, your…
The Mental Health Rare Genetic Disease Network (MHRGDN) is a newly launched system, developed by the National Institute of Mental Health. The MHRGDN spans 15 research sites across the country…
Say It Out Loud: There Is No Shame in Mental Illness. These are important words that every child, teen, and adult should hear! May is Mental Health Awareness Month, with…
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