Amyotrophic Lateral SclerosisMitochondrial DiseaseWaardenburg syndrome type 2AWaardenburg syndrome type 2BWaardenburg syndrome type 3Waardenburg syndrome- type 4

A Resilient Spirit: The Life of a Patient and Advocate

James Moore - December 3, 2024

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Crohn’s and Colitis Awareness Week, aims to educ

Crohn’s and Colitis Awareness Week, aims to educate people about the symptoms, causes, and ways to manage Crohn’s disease and colitis. The main reason for raising awareness is because the symptoms are quite common and are easily confused with other diseases and medical problems, resulting in people not receiving the right medical treatment in time.
#awarenessweek #purpleribbon #patientworthy

If you are interested in sharing your healthcare journey with Crohn's disease or colitis, click the link in our bio.

Happy International Day of Persons with Disabiliti

Happy International Day of Persons with Disabilities!
This year’s theme, “Amplifying the leadership of persons with disabilities for an inclusive and sustainable future,” reminds us that a truly inclusive world starts with empowering everyone. Let's break down barriers, challenge stereotypes, and create a world where everyone is valued and included. #IDPWD #disabilityinclusion #internationaldayofpersonswithdisabilities

And that's a wrap on No-Shave November! Here's som

And that's a wrap on No-Shave November! Here's some of our progress at the end of the month 👀 Thank you to everyone who participated, had the conversations, and supported the men in their lives. Happy holidays everybody 💙

#ShareYourStory with the link in our bio!

#MensHealth #NoShaveNovember

Dropping some knowledge on this #FactFriday! Disco

Dropping some knowledge on this #FactFriday! Discover 5 facts about Crohn's Disease and join our community by sharing your story. Link in bio! #PatientWorthy #ShareYourStory #Crohns #CrohnsDisease

Happy Thanksgiving! There is always something to

Happy Thanksgiving!
There is always something to be thankful for. 🦃 🍂

Interstitial lung disease (ILD) describes a large

Interstitial lung disease (ILD) describes a large group of disorders, most of which cause progressive scarring of lung tissue. Follow along to learn more.

If you or anyone you know is diagnosed with ILD, share your healthcare story by clicking the link in our bio.

We're dedicating our last #MustacheMonday of Men's

We're dedicating our last #MustacheMonday of Men's Health Awareness Month to Gary, who recently rang the bell and overcame prostate cancer! A frequent blood donor, Gary was recommended a physical after the Red Cross told him his blood pressure was high. He learned he had prostate cancer in September of 2023, but maintained a positive mindset and counted his blessings every day, never doubting that he'd ring that bell. It's always important for men to check in with their doctors when any new symptoms arise, and just as important to keep a positive mindset along the way!

#ShareYourStory with the link in our bio

#MensHealth #MensHealthAwarenessMonth #PatientWorthy

Did you know that November is Pulmonary Hypertensi

Did you know that November is Pulmonary Hypertension Awareness Month? Come along as we talk more about this group of rare diseases and help contribute to spreading awareness! #PulmonaryHypertension #PulmonaryArterialHypertension #PAH #RareDisease

We had the privilege of getting to know Betrice. B

We had the privilege of getting to know Betrice. Betrice is a part of the 2% of people of color living with Alpha-1 antitrypsin deficiency. She would love to share her story in hopes to spread awareness about Alpha-1 to those that think they may not be affected. To learn more about Betrice please watch her video. If you have a story to share about Alpha-1 click here. https://sforce.co/3VGf2wX

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This Men's Health Awareness month, share your authentic story with others. Raise awareness and inspire change!

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.

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