FindMeCure

@FindMeCure

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Vrijeme pridruživanja: rujan 2015.

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  1. prije 12 sati

    There are as many different experiences as there are people who live the spoonie life but even stories different from our own can make us feel less alone and give us hope. Just remember to "Live you illest life"!

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  2. proslijedio/la je Tweet
    28. sij

    “my wife is my rock , without her I wouldn’t be here 1000% “ “I’d heard stories about partners leaving partners diagnosed with prostate cancer so I asked her why do stay with me ? Grace looked at me in THAT way - “I’m here to stay”

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  3. 25. sij

    Hair loss is one of the reasons many patients fear chemo. Far from finding a perfect solution, research is advancing innovative methods of prevention - the cooling cap among them. Learn more about to know if it's a good option for you.

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  4. proslijedio/la je Tweet
    23. sij

    The more we focus on the real-world patients’ obstacles and their patient journey, the fewer issues the industry will face. Read my latest blog article on the hurdles in in

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  5. 22. sij

    Diagnosed with at age 5, Allison Foss is one of those rare MG patients with the MuSK antibody, the rarest kind of MG. Read her inspiring story of a patient and a patient advocate at ➡️

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  6. proslijedio/la je Tweet
    17. sij

    An excellent article by Beth Harper. I fully agree that disruption is not coming from and . They are just the tools for achieving better KPIs in . The more we focus on…

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  7. 17. sij

    don't always test invasive treatment methods - sometimes the purpose of research is observation. We owe a lot of what we know about health to observational studies. Here's what they do.

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  8. 15. sij

    Essential questions about the use of real-world evidence in rare disease will be answered on 1-2 April in London. Our will be there to talk about effective strategies, patients and real-world evidence. Ping her if you are around!

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  9. proslijedio/la je Tweet
    14. sij
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  10. 10. sij

    Your MG diagnostic journey can take up to a few months. Know what to expect, what tests you can request and when to seek a second opinion 👩‍⚕️

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  11. 6. sij

    It has been a remarkable year of promise in ! It's all thanks to and all the researchers, patients and drug developers taking part in !

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  12. 1. sij

    To welcome the new decade in we recommend celebrating your achievements. That's what we did! Take a look at what 2019 had in store for our blog. 🥳

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  13. 21. pro 2019.

    Don't let stop you from enjoying a wonderful time with your loved ones. Here's how you can better deal with symptoms over the holidays.

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  14. 16. pro 2019.

    It was today and we raised more money than expected. Thanks to everyone who supported us and the Association of Children with Oncohematological Diseases.

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  15. 12. pro 2019.

    is the foundation upon which we can build a better tomorrow. As UN Secretary-General António Guterres reminds us, health is the driver of economic growth and social change.

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  16. proslijedio/la je Tweet
    11. pro 2019.

    Thank you for meeting with EBC & for acknowledging the growing need for support of to help improve the lives of the 179 million living with conditions! We look forward to continued collaboration with you & your team.

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  17. 6. pro 2019.

    If it feels like has taken away all of life’s joy, we're here to give you some tips on beating . It's far from a losing battle 💪

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  18. 4. pro 2019.

    Our friends at RareDiseaseGhana Initiative are embarking on a campaign to raise $35,000 to support the screening of 500 newborns in Ghana for more than 50 inherited disorders. Help them by donating, this can save a life!

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  19. proslijedio/la je Tweet

    Today is the International Day of Persons with Disabilities. Over 1 billion people in the 🌏🌍🌎 experience some form of disability. Let's celebrate diversity & promote the human rights of people with disability. !

    Infographic entitled “Better health for people with disabilities,” showing various statistics about disability and health.
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  20. 28. stu 2019.

    No matter whether we celebrate or not, is a great occasion to express our gratitude to all companies for the trust and support they provided us with. Stay healthy and enjoy life!

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