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Pulmonary veno-occlusive disease

I Am Rare, I Am Here

My name is Rim Wafaa Bendjaada. I am 22 years old, a rare disease and pulmonary hypertension advocate from Algeria, living with pulmonary veno-occlusive disease

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Rare Disease

All the Warm Blankets

Editor’s Note: The following is an excerpt from Bird’s Eye View: Stories of a Life Lived in Health Care by Sue Robins. I remember every single

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Behind every lung cancer diagnosis is a person, a story, a family, and a life that extends far beyond the disease.
Lung cancer doesn't look the same for everyone, and no two experiences are identical. This month, we recognize those navigating a diagnosis, honor those we've lost, and stand alongside the families and caregivers who walk this journey with them.
Awareness is more than knowing the name of a disease. It's about listening, understanding, breaking down stigma, and making sure every person's story deserves to be heard.
This Lung Cancer Awareness Month, let's make room for more awareness, more compassion, and more support. 💙
#LungCancerAwarenessMonth #LungCancerAwareness #PatientWorthy
... See MoreSee Less

Behind every lung cancer diagnosis is a person, a story, a family, and a life that extends far beyond the disease.
Lung cancer doesnt look the same for everyone, and no two experiences are identical. This month, we recognize those navigating a diagnosis, honor those weve lost, and stand alongside the families and caregivers who walk this journey with them.
Awareness is more than knowing the name of a disease. Its about listening, understanding, breaking down stigma, and making sure every persons story deserves to be heard.
This Lung Cancer Awareness Month, lets make room for more awareness, more compassion, and more support. 💙
#LungCancerAwarenessMonth #LungCancerAwareness #PatientWorthy
19 hours ago

Myositis is more than muscle weakness.
For those living with myositis, everyday activities that once felt simple can become challenging. From navigating fatigue and muscle pain to adjusting daily routines, the impact of this condition can extend far beyond what others see.
Raising awareness helps build understanding, encourage earlier recognition of symptoms, and remind those affected that their experiences matter. If you're interested in sharing your story, click here: ow.ly/uTwy5103vBx
#myositis #myositisawareness #autoimmunedisease #chronicillness #rarediseaseawareness #shareyourstory #PatientWorthy
... See MoreSee Less

Myositis is more than muscle weakness. 
For those living with myositis, everyday activities that once felt simple can become challenging. From navigating fatigue and muscle pain to adjusting daily routines, the impact of this condition can extend far beyond what others see.
Raising awareness helps build understanding, encourage earlier recognition of symptoms, and remind those affected that their experiences matter. If youre interested in sharing your story, click here: https://ow.ly/uTwy5103vBx
#Myositis #MyositisAwareness #AutoimmuneDisease #ChronicIllness #RareDiseaseAwareness #ShareYourStory #PatientWorthyImage attachmentImage attachment+2Image attachment
21 hours ago

For the millions of people living with epilepsy, every day can bring unique challenges, triumphs, and moments of resilience. During Epilepsy Awareness Month, we celebrate the strength of the community while working to increase understanding and inspire meaningful change. 💜 #epilepsyawarenessmonth #EpilepsyAdvocacy #epilepsy #PatientWorthy ... See MoreSee Less

For the millions of people living with epilepsy, every day can bring unique challenges, triumphs, and moments of resilience. During Epilepsy Awareness Month, we celebrate the strength of the community while working to increase understanding and inspire meaningful change. 💜 #EpilepsyAwarenessMonth #EpilepsyAdvocacy #Epilepsy #PatientWorthy
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