In 2019, Courtney and Michael Henderson welcomed the newest member of their family – their son Luke. They were thrilled at this new addition, who they say is one…
June 30, 2022 will be recognized as Arthrogryposis Multiplex Congenita (AMC) Awareness Day, a time to spread awareness about arthrogryposis multiplex congenita among the general public and in the medical…
The medical term for an “informal caregiver” describes a person who willingly takes the responsibility to help a spouse, family member, friend, or partner. The level of care and responsibility…
On June 10, 2022, Patient Worthy partner GACI Global hosted an hour long webinar on the subject of hearing loss, featuring Dr. Karen Wilber. GACI Global is a nonprofit organization…
The month of June is recognized as Intrahepatic Cholestasis of Pregnancy (ICP) Awareness Month, a time to spread awareness about the rare condition among the general public and the medical…
June 19, 2022 will be recognized as World Sickle Cell Day. This international event is intended to help spread awareness about sickle cell disease among the general public and in…
I've known some wonderful fathers throughout my life. My own father was a gem. My siblings agree. However, it was not until I became immersed in the rare disease world…
When Brianna Terry was just two years old, her doctors gave her a diagnosis of autosomal recessive osteopetrosis. At the time, the doctors were concerned about her wellness; they…
According to a story from the BHD Foundation, Patient Worthy partner The Myrovlytis Trust, along with the BHD Foundation and Pulse Infoframe, are collaborating on an international Birt-Hogg-Dubé (BHD) syndrome…
According to a story from Scleroderma News, June is recognized as Scleroderma Awareness Month, a time for spreading awareness about scleroderma among the general public and in the medical field.…
Written by: Tyler Bradley, PFIC Network The PFIC Scientific Conference Held Many Great Presentations and Roundtables That Informed Both The Scientific And Patient Communities. Last month the PFIC Network hosted…
On January 9th, Jacob Wiley was preparing to see his three-year-old daughter Adelaide in the hospital. It was a day that Jacob and his wife Ashley will never forget.…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
Tourette Syndrome affects one million Americans. 2022 is the Tourette Association of America's 50th Anniversary, and to celebrate, you can get involved in Tourette Syndrome Awareness Month from May 15th…
HAE Junior, an advocacy group from the Czech Republic and a Patient Worthy partner organization, is issuing a renewed call for submissions for its Stronger Than HAE art exhibition. This…
According to a story from BBC, 28 year old Saskia James has struggled with myalgic encephalomyelitis (also called chronic fatigue syndrome) for years, which began with the onset of seizures…
Continued From Part One He cannot participate in the sports and physically demanding hobbies he once enjoyed. “Due to pool & gym closures during the Covid pandemic, walking was my…
I’ve known people to almost faint at the mention of words like “cancer,” “heart disease,” or “dementia,” imagining the uncertainty of one’s fate when confronted with these awful diseases.…
According to a story from ALS News Today, around 5,000 people get diagnosed with amyotrophic lateral sclerosis (ALS) annually. In addition, costs of treatment for patients average $250,000 out of…
It is believed that in 1916 a German doctor named Brachmann first identified a patient with symptoms of a disease later known as Cornelia de Lange syndrome. Then in…
This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization. Continued From Part Two We were told about what…
The month of May is recognized as National Myositis Awareness Month, a time to spread awareness about myositis among the general public and the medical field. Organized by The Myositis…
After over 30 years of not knowing another family dealing with the same rare condition that our daughter Kelley had, we finally started to connect with others, thanks to the availability of…
This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization. Continued From Part One At this stage, the ED…
From April 22 to April 23, 2022, the CureGRIN Foundation and GRIN Therapeutics conducted their 2022 GRI Virtual Conference, a special online event designed to converge patient families, industry stakeholders,…
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