Imagine a journey where each choice is uncharted, where diagnosis is an odyssey, and treatment a seemingly distant hope. This is the uncertain reality for those living with rare disorders and their families. Living with a rare disorder often means facing uncertainties, tirelessly searching for solutions, and enduring daily resilience. This Rare Disease Day, join us when we launch a new research journey. A journey for generating discussion, seeking answers, and possible treatment. #TeamPura #puraperfect #purasyndrome #RareDiseaseDay #rare #research #raredisease
PURA Foundation Australia’s Post
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Last call for sharing your experience on #MultipleSclerosis symptoms and how are you managing them! A total of 16,000 people with #MS from across Europe have already taken EMSP - European Multiple Sclerosis Platform Impact of Multiple Sclerosis Symptoms #IMSS survey, sharing their voices and experiences and helping us to make impactful change in symptomatic care. If you are a person living with MS, tell us about your symptoms and how you deal with them! 📆 The survey is open until August 31. 👉 Take the survey and share it with people with MS: https://bit.ly/45fnaI6
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What medications help with idiopathic hypersomnia? What can you do after diagnosis? Join us for a discussion led by Dr. Kiran Maski on "Treatment Options for Idiopathic Hypersomnia." UNIGHT welcomes everyone — people with idiopathic hypersomnia and related disorders, family, and friends! Monday, January 29th via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific). Join, listen, share, and connect! Register Here: https://lnkd.in/eHZ5jJBf Let’s get #BeyondSleepy! UNIGHT is not a focus group and is not part of a research study and there is no compensation for attending.
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Last call for sharing your experience on #MultipleSclerosis symptoms and how are you managing them! A total of 16,000 people with #MS from across Europe have already taken EMSP - European Multiple Sclerosis Platform Impact of Multiple Sclerosis Symptoms #IMSS survey, sharing their voices and experiences and helping us to make impactful change in symptomatic care. If you are a person living with MS, tell us about your symptoms and how you deal with them! 📆 The survey is open until August 31. 👉 Take the survey and share it with people with MS: https://bit.ly/45fnaI6
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Amplifying the voices of people affected by Alzheimer’s disease on political issues affecting their lives and support their ability to access innovations in care and treatment.
Tune in to another weekly wisdom episode with our CEO, Jim Taylor on the importance of getting an annual cognitive screening if you're 65+ Here's why! 1. Treatment options and clinical trials are now available with a diagnosis. 2. Up to 25% of all cognitive impairment is reversible - identify it as quickly as possible. 3. Take advantage of the GUIDE Program will provide continuous services for those living with the disease #Alzheimers #VoicesofAlzheimers #cognitivescreening #clinicaltrials
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Every year on April 11th, the world comes together to observe World Parkinson's Day, a day dedicated to raising awareness about Parkinson's disease and its impact on individuals, families, and communities worldwide. Parkinson's disease is a progressive neurological disorder that affects movement, balance, and coordination, and it currently has no cure. World Parkinson's Day serves as an opportunity to educate the public about the signs, symptoms, and challenges associated with Parkinson's disease. It's a time to highlight the importance of early detection, diagnosis, and treatment, as well as to promote research efforts aimed at finding better therapies and ultimately a cure for Parkinson's. #WorldParkinsonsDay #ParkinsonsAwareness #ParkinsonsDisease #UniteForParkinsons #ParkinsonsSupport #EndParkinsons #ParkinsonsResearch #ParkinsonsCommunity #ParkinsonsFight #ParkinsonsAwarenessMonth #LivingWithParkinsons #ParkinsonsAdvocacy #ParkinsonsHope #ParkinsonsWarrior
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‼️READ IF THIS SEEMS FAMILIAR‼️ This is a common experience many people who get chronic issues that don’t fall under a typical diagnosis. Certainly it was the case with me before I eventually got diagnosed with an autoimmune condition - which I think I may have avoided altogether had I known what I was doing back then. This can lead to feelings of frustration with the medical establishment. I know I felt extremely let down and actually the stress of trying to negotiate the medical system made me feel helpless. But the truth is, beyond acute illnesses or situations. The medical establishment has limited tools for chronic issues. The fundamental health of each cell in your body relies on the inputs you give it. And if the inputs are that you’re vulnerable, in a dangerous environment and deficient in nutrients - your cells are going to focus on prioritising survival NOT optimisation. And unfortunately there isn’t a medication that exists that can help this. However, if you understood exactly the issues behind why your biology is doing this in the first place - well then you can adjust, make changes and actually get results. ➡️this is exactly how I help people in my private 12 week program the “Symptom Reversal Formula” ✅if your interested in learning more, DM me “SYMPTOM” and I’ll get back to you with details. #autoimmunewarriors #autoimmuneprotocol #chronicillnesslife #ancestralhealth #guthealthy #functionalmedicinecoach #hashimotoswarrior ##thyroidwarrior #ibswarrior #ibslife #functionalmedicinepractitioner #paleofood #paleoketo #carnivorecommunity #lowfodmapliving #longcovidrecovery #chronicillnessawareness #vlcdiet #crohnsdisease #crohnsdiet #ulcerativecolitisdiet #ulcerativecolitiswarrior #thyroiddiet #hashimotoshealing #rheumatoidarthritisawareness #mastcellactivationsyndrome #chronicillnesssupport
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🔬Research is crucial for advancing treatment and care for those with bleeding disorders. By participating in studies, you help pave the way for new insights and better therapies. If you're interested in contributing to this important work, inquire with us to see what studies we have ongoing and how you can be involved. #WNYBC #ResearchMatters
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Did you know that approximately half of Australians diagnosed with MS are hesitant to talk openly about their diagnosis? That’s why we stand by the MS International Federation (MSIF) in their mission to raise awareness of the neurological disease globally and foster broader community support. Learn more here about how we’re supporting MS: https://lnkd.in/gVV8yE84 #MSResearch #MultipleSclerosis #MyMSDiagnosis #WorldMSDay
Merck MS Awareness Post_LinkedIn (1).mp4
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Noticing the early signs can make a difference in early diagnosis. Every Parkinson's story is different because every person is different, but it all starts with small changes. For instance, a slight tremor in the hand while pouring coffee. Or difficulty tying shoes, balance issues, and slowness in speech. Discovering Parkinson's disease can be an emotionally intense moment, but it's also the beginning of a journey of treatment, listening, and support. #parkinson #parkinsonsdisease #parkinsonsawareness #PD
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🔬Research is crucial for advancing treatment and care for those with bleeding disorders. By participating in studies, you help pave the way for new insights and better therapies. If you're interested in contributing to this important work, inquire with us to see what studies we have ongoing and how you can be involved. #WNYBC #ResearchMatters
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