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11 hours ago

ALS isn’t just a diagnosis — it’s a reality that reshapes everyday life, relationships and independence.
Awareness means learning beyond the surface, listening to lived experiences and understanding why continued research, access to care and early recognition matter. The more we educate ourselves, the better we can support individuals and families navigating this disease.
Knowledge builds compassion. Compassion builds change.
#ALSAwareness #LouGehrigsDisease #RareDiseaseOfTheWeek #RareDiseaseAwareness #ShareYourStory #PatientWorthy
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ALS isn’t just a diagnosis — it’s a reality that reshapes everyday life, relationships and independence.
Awareness means learning beyond the surface, listening to lived experiences and understanding why continued research, access to care and early recognition matter. The more we educate ourselves, the better we can support individuals and families navigating this disease.
Knowledge builds compassion. Compassion builds change. 
#ALSAwareness #LouGehrigsDisease #RareDiseaseOfTheWeek #RareDiseaseAwareness #ShareYourStory #PatientWorthy
12 hours ago

Huntington’s Disease (HD) is more than a diagnosis—it’s a lifelong journey for individuals and families.
HD is a rare, inherited condition that gradually affects movement, thinking, and behavior. Symptoms can include involuntary movements, balance and speech difficulties, changes in memory or decision‑making, and shifts in mood or personality. Both Adult‑Onset HD and the rarer Juvenile HD bring unique challenges, but early recognition and supportive care can make a powerful difference.
💙 Awareness leads to understanding. Understanding leads to compassion.
If you're interested in sharing your story with Huntington's Disease, click the link below.
bit.ly/4dV7gru
#HuntingtonsDisease #HDAwareness #PatientWorthy #ShareYourStory
... See MoreSee Less

Huntington’s Disease (HD) is more than a diagnosis—it’s a lifelong journey for individuals and families.
HD is a rare, inherited condition that gradually affects movement, thinking, and behavior. Symptoms can include involuntary movements, balance and speech difficulties, changes in memory or decision‑making, and shifts in mood or personality. Both Adult‑Onset HD and the rarer Juvenile HD bring unique challenges, but early recognition and supportive care can make a powerful difference.
💙 Awareness leads to understanding. Understanding leads to compassion.
If youre interested in sharing your story with Huntingtons Disease, click the link below.
 https://bit.ly/4dV7gru
#HuntingtonsDisease #HDAwareness #PatientWorthy #ShareYourStoryImage attachmentImage attachment+3Image attachment
13 hours ago

Parent Project Muscular Dystrophy #charlie!Tomorrow is Rare Disease Day, and this week PPMD is spotlighting stories from our Duchenne and Becker community.

Meet Charlie from New York, living with #Duchenne #musculardystrophy.

“Community is everything—those who have taken this journey and those that are side by side with us on our journey, provide strength and courage at the most challenging times. The PPMD community is our Duchenne lifeline, they’re always there and ready to help,” says Charlie’s mom, Cheryl.

Learn more about Rare Disease Day and share your story to come together and raise awareness for the global rare disease community: www.rarediseaseday.org/
#RareDiseaseDay #EndDuchenne
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Parent Project Muscular Dystrophy #Charlie!
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