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    RobinoSz_ns Jul 15 2019 2:48 am

    Acer Therapeutics Obtains Exclusive License to Celiprolol Pivotal Clinical Data from AP-HP

    “We have studied celiprolol for nearly two decades in vEDS patients and this is the only drug ever to demonstrate a clinical benefit in a randomized, controlled clinical study,” said Pierre Boutouyrie M.D., Ph.D., co-director of the clinical pharmacology service at the Georges-Pompidou European Hospital AP-HP and Principal Investigator for the celiprolol

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    RobinoSz_ns Jul 12 2019 4:50 am

    Genetics of Ehlers-Danlos Syndrome

    We are planning to collected blood and saliva for DNA extraction to use for genetic testing of children and adults with EDS and their relatives. Medical records from other institutions and clinical notes for visits in Dr. Holick's clinic will be reviewed to obtain the following information: previous diagnosis at other institutions, age, clinical signs and symptoms of EDS, Joints Hypermobility Syndrome (JHS), , an

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    RobinoSz_ns Jul 12 2019 4:49 am

    Genetics of Ehlers-Danlos Syndrome

    We are planning to collected blood and saliva for DNA extraction to use for genetic testing of children and adults with EDS and their relatives. Medical records from other institutions and clinical notes for visits in Dr. Holick's clinic will be reviewed to obtain the following information: previous diagnosis at other institutions, age, clinical signs and symptoms of EDS, Joints Hypermobility Syndrome (JHS), , an

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    RobinoSz_ns Jul 12 2019 4:43 am

    9 year old with Ehlers Danlos Syndrome signs contract to become an honorary member of the Northern Kentucky University's volleyball team

    Two sisters, 7 and 9, signed national letters of intent, inking contracts with Northern Kentucky University’s volleyball team.

    Taylor Conrad and Leah Conrad, of Florence, were presented with jerseys on Monday for the upcoming season. They signed their letters in front of a packed room of family, friends and

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    RobinoSz_ns shared RobinoSz_ns's post Jul 12 2019 4:38 am

    Ehlers-Danlos syndrome affects connective tissue, primarily the skin, joints and blood vessel walls.
    Symptoms include overly flexible joints that can dislocate, and skin that's translucent, elastic and bruises easily. In some cases, there may be dilation and even rupture of major blood vessels.
    Treatment helps manage symptoms and monitor for complications. Options include drugs, physiotherapy and sometimes surgery.
    Edited

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    RobinoSz_ns Jul 12 2019 4:35 am

    https://www.oneedsvoice.com/rarepoll-single/?poll=26

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    Carman Lake Mar 21 2019 8:44 pm

    I claim my #31st Human Right

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    revdari Mar 6 2019 4:15 pm

    I claimed my right!

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    revdari Mar 6 2019 4:13 pm

    I joined!

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    onevoice world Feb 25 2019 8:20 pm

    Join the movement to get control of your healthcare data. All it takes is downloading a free app! https://hu-manity.co/download/oneedsvoice

    Share a screenshot in rareCourage showing that you claimed your 31st Human Right and get a $5 Starbucks gift card (limit 1 per member)!

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    Elizabeth Townsend Feb 25 2019 7:53 pm

    I just declared my data as my property, and you can too. Check out the #My31 app to claim your right.

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    Elizabeth Townsend Feb 25 2019 7:52 pm

    I just declared my data as my property, and you can too. Check out the #My31 app to claim your right.

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    Bia Rangel Feb 12 2019 3:53 pm

    Fui diagnosticada cm SED hipermóvel no ano passado! Meu histórico, muitas fraturas no pé esquerdo, quatro costelas e clavícula! Tenho 55 anos e sequer tinha ouvido falar nessa síndrome! Fui diagnosticada por um reumatologista de São Paulo. Sempre tive muitas características da SED, porém, mesmo passando por mais de trinta ortopedistas, apenas um único médico na primeira consulta comentou no exame clínico sobre a síndrome e ele estava …Read more

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    Bia Rangel Feb 12 2019 3:26 pm

    Excelente tarde a todos!

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    flowerfloosey Nov 27 2018 6:52 am

    Hi.. I am new here.. looking to commiserate with fellow Zebras.. am 67 and diagnosed 6 years ago due to granddaughters diagnoses.
    Looking back thru my lifetime, there were many clues. My mother, a nurse tried so hard to find out why my legs hurt so bad. I have 8 grandchildren and 6 have EDS to varying degrees. I have one daughter and one son. Daughter has it for sure and son has signs but does
    Not want to believe it and is not very affected.
    Bo…Read more

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    RobinoSz_ns Nov 26 2018 8:03 am

    https://www.oneedsvoice.com/rarepoll-single/?poll=33

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    Norwegian Zebra Oct 23 2018 7:54 pm

    I am new in here. I needed zebras/spoonies in my life, because I got lonely for just talking to people "who don't get it".
    Spoons and love from Norway. ❤️💕
    If you wanna talk or need somebody. Just contact me. I am really good at making people feel better about them self.

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    Brittany Billow Aug 20 2018 5:12 pm

    Hi Guys!
    Just got back from the University of Utah where they're opening this month an EDS CLINIC!
    So blessed for that app. going back in 2-3 months to work with a group of 15 doctors, 3 physical therapist, 1 occupational therapist, a geneticist, and a POTs specialist!! They're also sending me to the wheelchair clinic to help me in that department.HUGE TEAM!!
    I feel so blessed and gifted that after 4 years! I finally will have a team! just w…Read more

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    angela anu Aug 8 2018 8:31 am

    EDS-H & JHS

    Understanding Ehlers-Danlos Syndrome Hypermobility-Type and Joint Hypermobility Syndrome

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    Noemi Maillé Jul 22 2018 1:10 pm

    Hi! Thank you for letting me join oneedsvoice.
    I’m from the Netherlands and have to say: we are way behind if it comes to eds. So I’m glad there is a platform like this where I can find info and fellow zebras!

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