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February is Rare Disease Awareness Month, a time to recognize the more than 30 million people in the U.S. living with one of thousands of rare conditions and the unique challenges they face. Because rare diseases often impact emotional well‑being, finances, and daily life in ways that aren’t always visible, understanding how to support someone living with one is incredibly important. Many people experience long diagnostic journeys, misunderstood symptoms, and social isolation, which can make the world feel smaller and harder to navigate. When friends, family, and communities take the time to learn, listen, and show compassion, it helps rare disease patients feel seen, validated, and less alone in a journey that can often feel overwhelming. This month is a reminder to stand with the rare disease community and help create a world where no one feels invisible. 💙
#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy
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February is Rare Disease Awareness Month, a time to recognize the more than 30 million people in the U.S. living with one of thousands of rare conditions and the unique challenges they face. Because rare diseases often impact emotional well‑being, finances, and daily life in ways that aren’t always visible, understanding how to support someone living with one is incredibly important. Many people experience long diagnostic journeys, misunderstood symptoms, and social isolation, which can make the world feel smaller and harder to navigate. When friends, family, and communities take the time to learn, listen, and show compassion, it helps rare disease patients feel seen, validated, and less alone in a journey that can often feel overwhelming. This month is a reminder to stand with the rare disease community and help create a world where no one feels invisible. 💙
#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthyImage attachmentImage attachment+5Image attachment

Meet Samantha who is living life with Loeys Dietz Syndrome and Homocystinuria. This Rare Disease Month, her story helps remind us why representation, awareness, and community matter!

"Hi, my name is Samantha. I have Loeys Dietz Syndrome and Homocystinuria. It has been 10 years since I was diagnosed with both rare diseases at the same time. I was missed through the Newborn Screening for HCU, as back in 1992 when I was born where I am from did not have HCU on the NBS and I was missed for 23 years. While HCU has been around for a long time, LDS has only been around since 2006. My parents and my cardiologist always knew there was something going on, but we all could never pinpoint what it was. During my spring semester of my senior year in college, I felt something was off, and I had mentioned this to my mom and neurosurgeon, as I also have Chiari. My neurosurgeon did all his tests and could not find anything, and I was then sent to the genetics department and that is when I got blood drawn for a full genetic panel. I was officially diagnosed months later after fighting with insurance that this was medically necessary. About six months after my diagnosis, I was trying to find ways to get involved and meet others within the rare disease community as I have always done better when I am able to find a support group of friends. That is when I found the Everylife Foundation and joined their young adult program. In February of 2019, I started my rare disease advocacy journey by going to Rare Disease Week on Capitol Hill. Ever since then, I have advocated with my local and federal legislators on behalf of rare disease legislation. I advise those who are just starting in their rare journey to never give up the fight, whether it is for your own healthcare or helping others by advocating with your local and federal legislators. Rare Disease Month means awareness, awareness that my friends and I are seen, because we are not one, but many hoofbeats of mighty zebras!"

#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy #LoeysDietzSyndrome #Homocystinuria
... See MoreSee Less

Meet Samantha who is living life with Loeys Dietz Syndrome and Homocystinuria. This Rare Disease Month, her story helps remind us why representation, awareness, and community matter! 

Hi, my name is Samantha. I have Loeys Dietz Syndrome and Homocystinuria. It has been 10 years since I was diagnosed with both rare diseases at the same time. I was missed through the Newborn Screening for HCU, as back in 1992 when I was born where I am from did not have HCU on the NBS and I was missed for 23 years. While HCU has been around for a long time, LDS has only been around since 2006. My parents and my cardiologist always knew there was something going on, but we all could never pinpoint what it was. During my spring semester of my senior year in college, I felt something was off, and I had mentioned this to my mom and neurosurgeon, as I also have Chiari. My neurosurgeon did all his tests and could not find anything, and I was then sent to the genetics department and that is when I got blood drawn for a full genetic panel. I was officially diagnosed months later after fighting with insurance that this was medically necessary. About six months after my diagnosis, I was trying to find ways to get involved and meet others within the rare disease community as I have always done better when I am able to find a support group of friends. That is when I found the Everylife Foundation and joined their young adult program. In February of 2019, I started my rare disease advocacy journey by going to Rare Disease Week on Capitol Hill. Ever since then, I have advocated with my local and federal legislators on behalf of rare disease legislation. I advise those who are just starting in their rare journey to never give up the fight, whether it is for your own healthcare or helping others by advocating with your local and federal legislators. Rare Disease Month means awareness, awareness that my friends and I are seen, because we are not one, but many hoofbeats of mighty zebras! 

#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy #LoeysDietzSyndrome #Homocystinuria

We're honored to continue sharing Elena Genik's story about her experiences with Graves disease and Thyroid eye disease. Read part 6 of 10 here:

patientworthy.com/2026/02/12/the-emotional-toll-of-thyroid-eye-disease-what-patients-are-not-told/
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Were honored to continue sharing Elena Geniks story about her experiences with Graves disease and Thyroid eye disease. Read part 6 of 10 here:

https://patientworthy.com/2026/02/12/the-emotional-toll-of-thyroid-eye-disease-what-patients-are-not-told/
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