Zach and Geri Landman are devoted parents and physicians – a pain specialist and pediatrician, respectively – committed to making the world a better place for those around them. They…
Unfortunately, doctors and scientists are still learning about Zellweger syndrome, a rare multisystem genetic disorder. But this can be incredibly difficult for families whose children are diagnosed – after all,…
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month,…
Kris and Carla Thompson were so thrilled when they learned that they would be expecting a daughter. When Lucy was first born, Carla describes her as a cheeky, upbeat, and…
On July 27, 2022, the National Organization for Rare Disorders (NORD) hosted an online webinar titled "Drug Development for Rare Diseases: A Community Conversation." This program was designed to help…
August has begun and you know what that means – it is Spinal Muscular Atrophy (SMA) Awareness Month! During this month, many patients, advocacy groups, family members, and others work…
The month of August is recognized as Stevens-Johnson Syndrome Awareness Month. The goal of this month is to elevate awareness about Stevens-Johnson syndrome among the general public and in the…
Rare Disease Diagnoses Get a Boost from Scientists’ New guidelines Professor Dame Sue Hill, Chief Scientific Officer of NHS England, recently interviewed with MedicalXpress citing the importance of unraveling the mystery…
Web-Based Rare Chronic Illness Support Group A peer support group for those living with rare health challenges led by Kerry Heckman, MSW, LICSW 1st Tuesday of each month, 4-5pm PST…
On July 28, 2022, the Rare Disease Legislative Advocates (RDLA) hosted their monthly webinar for July. As always, these recurring meetings help provide critical updates to the rare disease community…
Walk, Bike, or Move for Oley! Walkathon 2022 August-October 2022 Once again, our annual walkathon will be virtual. This year, though, we urge you to gather in your communities—as you…
When Ryker Colón was first born, his parents Eddie and Brandi noticed something potentially concerning. Their young son had a chronic cough - and nobody could seem to figure out…
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…
Written By Ashely Winslow, PhD, President & Chief Scientific Officer of Odylia Therapeutics One of the biggest issues impacting many rare disease communities is the availability of approved treatments. While…
Although many people in the United States face challenges when seeking healthcare services, new research has found that when seeking a diagnosis for a rare disease, the situation is…
Shortly after he was born, Asa Burnside was diagnosed with Niemann-Pick disease type A, a rare genetic metabolic disorder. Since then, Asa has brought so much joy to his family’s…
Primary progressive aphasia (PPA) is a rare neurological disorder and form of frontotemporal dementia which affects one’s ability to communicate. In many cases, people develop PPA prior to turning…
Michael Klim was traveling three years ago when he felt like something within his body was wrong. The Polish-born swimmer, who has won two gold medals for Australia while participating…
Rituximab has been used to treat patients with cancers such as non-Hodgkin’s lymphoma (NHL), and various autoimmune diseases. Recently, a study sought to understand whether rituximab treatment would be safe…
Sometimes, certain health conditions can increase the risk of developing other conditions. According to a new research study, this may be the case with porphyria and hepatocellular carcinoma. An article…
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month,…
The National Organization for Rare Disorders (NORD) recently held its Living Rare, Living Stronger Patient and Family Forum on June 26, 2022. This event took place both virtually and in-person…
Web-Based Rare Chronic Illness Support Group A peer support group for those living with rare health challenges led by Kerry Heckman, MSW, LICSW 1st Tuesday of each month, 4-5pm PST…
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…
The last approved treatment option for Pompe disease in Europe was given approval in 2006, so 16 years ago. However, the European Commission (EC) recently approved a new therapeutic…
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