Marni Cartelli

@Purrfectly_Rare

Wife, /RSD pt, Advocate & . I lost my career bc of access so I fight to make sure next person Dx w/a Rare Disease has more options

Long Island, NY
Vrijeme pridruživanja: ožujak 2017.

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  1. proslijedio/la je Tweet
    26. ožu 2019.
    , , i još njih 5
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  2. Instead of “shake, rattle & roll” I had “pop, grind & jiggle” Hoping it is just a blown stitch & not that everything has shifted again Never more thankful Dr took time 2 individually stitch wires in place instead of using 1 universal anchor backup

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    prije 12 sati

    Join NORD at the 2020 World Orphan Drug Congress USA from April 29-May 1! The World Congress is a global gathering of 1,500 attendees from 50 countries, w/ 350+ speakers & 260+ sessions covering all aspects of rare drug development & research.

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    South Dakota Alert: South Dakota bill to be introduced and we anticipate hearings the week Feb 18 or 24, most likely on a Mon/Wed/Fri. Please help us find patients to testify at these hearings. Please DM us if you are in SD AND willing to share your story!

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    4. velj

    “We have to figure out how to establish the collaborations we need to provide health equity” -Khristal K. Davis, JD, Founder, Texas Rare Alliance

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    4. velj

    "We cannot treat what we do not diagnose." - Khrystal K. Davis, JD, Founder, Texas Rare Alliance

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  7. My beautiful & inspiring & friend Don't forget is Friday, February 7th!

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  8. proslijedio/la je Tweet
    4. velj

    A message for World Cancer Day I'm an survivor. I was diagnosed on May 5, 2015. I am in remission now. It's all behind me butt it was a pain in the ass!!! 😉

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    Did you know? Rare diseases currently affect 5% of the worldwide population. Download, edit and adapt the infographics from . Share them on social media to spread the word about Rare Disease Day on 29 February!

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  10. proslijedio/la je Tweet
    5. velj

    'I Spy' iPain Living Magazine Go pick up your copy today in the featured section at and other newsstands nationwide!

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  11. Thank U & for highlighting the As some1 w it, I know title will trigger some bc we have been dismissed medically & told 2 just think positive 2 get through pain- & we know it isnt that easy But mindset= big part of equation Be open 2 it

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  12. proslijedio/la je Tweet
    prije 15 sati

    Barby took one of the scariest moments of her life and turned it into an opportunity to advocate for herself and others. During ivWatch recognizes Barby & her journey to becoming a cheerleader of hope. See her courageous story here:

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  13. My baby was diagnosed with She is only 6 & spent 5 of those years getting me through the hardest time in my life; my accident & journey Hardest part=this AM I woke up w her pouncing on my face wanting to play

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  14. 4. velj

    Remember... Wherever you are in your or journey, you are not alone This community is filled with love & Don’t be afraid to reach out looking for resources

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    3. velj

    Help us spread by requesting that your governor or mayor issue a proclamation declaring March 7 as , also known as Narcolepsy Awareness Day. All info is on our website!

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    Sponsor registration & prospectus is up for the - International Pain Summit 2020 n Phoenix, AZ... check it out! The sooner you sign on, the more perks you get! November 12-14, 2020 Save The Date, Mesa Convention Center

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    3. velj

    “The vast majority of people prescribed controlled substances take them as directed. Proposed cuts in quotas will negatively impact Americans who have a legitimate medical need for opioids.” (via )

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    FDA will join the global observance of Rare Disease Day 2020 raising awareness about the 7,000 known rare diseases, many of which have no treatment. Join us at our public meeting on February 24, 2020

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  19. 3. velj

    Anyone else want a cane like the one used in her show? Can you guys imagine walking into our conferences, or better yet, meetings with members of Congress with that? It just screams Bet they would pay attention then

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