November is Mouth Cancer Action Month: Spreading Rare Disease Awareness
The month of November is recognized as Mouth Cancer Action Month. Supported by the Oral Health Foundation and the Mouth Cancer Foundation, this is a time to help advocate and…
The month of November is recognized as Mouth Cancer Action Month. Supported by the Oral Health Foundation and the Mouth Cancer Foundation, this is a time to help advocate and…
November 10 is recognized as World Neuroendocrine Tumor (NET) Cancer Day, a time to spread awareness about neuroendocrine tumors, a group of rare cancers, among the medical field and in…
The month of November is recognized around the world as Lung Cancer Awareness Month, a time to advocate and spread awareness about lung cancer. This form of cancer is not…
Only around 350 to 500 people in the United States are diagnosed with Creutzfeldt-Jakob disease (CJD) each year. Unfortunately, this disease often causes rapid cognitive decline and physical deterioration,…
You are invited to join hundreds of thousands of people touched by spina bifida, the most common congenital birth defect causing disability. There is no cure. This is a…
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…
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…
The month of September is recognized as National Sickle Cell Awareness Month in the US. This is a time to spread awareness about sickle cell disease among the general public…
The incidence of gastroschisis has doubled over the past 20 years. Read “Jeanie’s Gastroschisis Baby” and learn from a brave, young first-time mom about discovery and how Gastroschisis can be…
June 30th is World Pneumothorax Day and this year we are urging all doctors to ask about family history if a patient presents with a spontaneous pneumothorax. This one…
June 17th is International CDKL5 Day. During the month of June let’s tag every day with a reminder to those in the CDKL5 community to promote collaboration and fundraising.…
The month of May is recognized as Prader-Willi Syndrome (PWS) Awareness Month, and May 27th is International PWS Day. This is a time to spread awareness about this rare disease…
Written by Carter Hemion On April 17, 2023, Governor Inslee signed a ceremonial proclamation recognizing May as Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorder Awareness month in Washington State. The International…
There is no cure for cystic fibrosis. That is the reason the Cystic Fibrosis Research Institute (CFRI) is very vocal and makes it clear that cooperation is needed from the…
When Kristen Moore’s son Jackson was first diagnosed with tuberous sclerosis complex (TSC), she decided to translate her emotions into action. As WSOC-TV reports, she dove into education, awareness,…
May 7, 2023 will be recognized as Cystinosis Awareness Day. This will be a day to spread awareness about the rare disease cystinosis among the general public and the medical…
April 19, 2023 will be recognized as Global Porphyria Day, a time to spread awareness about porphyria, a rare disease, among the general public and the medical field. This year,…
Caring is Sharing and Getting Involved. On April 17th Landmarks all over the world will be asked to ‘Light It Red’ in honor of Hemophilia Day. The theme of this…
April 8, 2023 will be recognized as Cushing's Awareness Day, a time to help spread awareness among the general public and the medical community about Cushing's syndrome and Cushing's disease,…
March 24 is being recognized this year as Lipoprotein(a) Awareness Day, a time to spread awareness among the general public and the medical field about elevated lipoprotein(a), a condition which…
The month of February is recognized as Turner Syndrome Awareness Month, a time to spread awareness about this rare disease among the medical field and the general public. The Turner…
Generalized arterial calcification of infancy (GACI) and autosomal recessive hypophosphatemia rickets type 2 (ARHR2) Awareness Day is recognized each year on Feb 1. This is a time for spreading awareness…
October 23 is recognized each year as Kabuki Syndrome Awareness Day, a time to help spread awareness about this syndrome among the general public and in the medical field. Kabuki…
October 5 is recognized each year as Progressive Familial Intrahepatic Cholestasis (PFIC) Awareness Day, a time to help spread awareness about this rare disease among the medical field and the…
September 24, 2022 will be recognized as Familial Hypercholesterolemia (FH) Awareness Day, a time to spread awareness about this under-recognized condition among the general public and in the medical field.…