Patient Worthy is proud to announce some new features to our website! Thanks to your valuable feedback, we have now enabled the personalization of your homepage to emphasize the news…
Sólo quedan TRES días más para que las familias, los grupos de defensa de los pacientes y los investigadores den aportes a la nueva iniciativa del NIH sobre la investigación…
CysticLife.org, una sitio de web para la comunidad de la fibrosis quística (FQ), se está embarcando en un esfuerzo histórico de la recaudación de fondos para apoyar la investigación dirigida…
Instituto Franciscano para la Ciencia y la Salud en Steubenville, Ohio patrocina la investigación sobre defectos metabólicos que pueden conducir a trastornos convulsivos relacionados mitocondriales raras. Si bien esta es…
Instituto Franciscano para la Ciencia y la Salud en Steubenville, Ohio patrocina la investigación sobre defectos metabólicos que pueden conducir a trastornos convulsivos relacionados mitocondriales raras. Si bien esta es…
De acuerdo con la Fundación de Fibrosis Quística, cerca de 30.000 personas viven con FQ en los EE.UU., y sólo alrededor de 1.000 nuevos casos son diagnosticados cada año. La…
In March, Delaware became the latest state to propose bills aimed at either combating Lyme disease or requiring expanded insurance coverage for the disease. Leaders in the state—which has one of…
De acuerdo con la Fundación de Fibrosis Quística, cerca de 30.000 personas viven con FQ en los EE.UU. y casi 1.000 nuevos casos son diagnosticados cada año. La fibrosis quística…
CysticLife.org, una red en línea para la comunidad de la fibrosis quística (FQ), se está embarcando en un esfuerzo de recaudación de fondos para apoyar la investigación histórica impulsado por…
Acromegaly.care is bringing the patient community a webinar tomorrow March 16 12:00 – 12:30 p.m. EST. What is the Webinar About? How to manage acromegaly as a chronic condition, including coping mechanisms and key…
The European Organization for Rare Diseases awarded Actelion Pharmaceuticals the EURORDIS Company Award 2016, for their research and support of patients with Pulmonary Hypertension. “I am very proud that, together with…
Acromegaly.care will be hosting an acromegaly patient webinar on Wednesday, March 16 from 12:00 – 12:30 p.m. EST. The webinar will feature acromegaly patient Casey, and research coordinator Lisa Mitchell from…
Sleep health is vital to living well and being "healthy". The effects of sleep deprivation are real and can be devastating. Check out this video from neuroscientist Dr. Claudia Aguirre via…
30 days until April 1st when Patient Worthy will announce the winner of a $500 travel stipend to the 2016 Acromegaly Community Bi-annual Meeting, April 29-May 1st (which is free). Patient…
It is Rare Disease Week 2016 and there were hundreds of advocates at Rare Disease Day today at NIH in Bethesda, Maryland. Patient Worthy has been providing live coverage from the NIH so…
Winters may be long in Canada, but the residents of Ontario’s Saugeen Shores are hardly cold-hearted. On April 1st, 2016, the Saugeen Shores Skating Club is inviting Ex-NHL players, figure…
Register now to join patients, caregivers, physicians and other advocates from across the country at the exciting events we have planned for Rare Disease Week on Capitol Hill. We are thrilled…
Thanks to a bad band's 1984 contribution to "culture," everyone’s got a sarcastic “I’m a big deal in Japan” T-shirt. But for once, a blog is writing that phrase without…
Can you believe it? Patient Worthy has made it to the big times by winning an award for being the best patient-centric consumer website. We're stoked! But here's what really counts:…
Listen up, people! Are you living with a neurological disease or condition? Do you want to inspire people by sharing your personal story on video? If so, the American Academy…
Another science fiction trope may be moving closer to science reality. Smartphone and tablet-maker Samsung and medical device company Medtronic have joined forces to create something startling: Neural implants that…
We know that the cost of medical treatment, even with great insurance, is high. Transportation, parking, inability to work full-time because you are taking care of a very ill family…
Franciscan Institute for Science and Health in Steubenville, Ohio sponsors research on metabolic defects which can lead to rare mitochondrial related seizure disorders. While this is a limited rare disease program- if…
Ambry Genetics is a service provider to research and development physicians and patients. they've been around since 1999 and have become an authority and trusted source in genetic counseling. Ambry…
According to the Cystic Fibrosis Foundation, about 30,000 people are living with CF in the US and just about 1,000 new cases are diagnosed each year. Cystic Fibrosis (CF) is a chronic inherited disease.…
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