Rare Disease News

CCHS Family Network

Published December 15, 2015 by NORD

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The CCHS Family Network is ending the isolation and angst of families dealing with a rare diagnosis where knowledge and treatment is extremely limited.

Be a Hero: Help NORD Empower the Rare Disease Community in Washington D.C. and in all 50 States.

Published December 10, 2015 by NORD

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Thanks to the support of our partners and donors, NORD has launched new initiatives that empower the rare disease community in every state and strengthen the patient voice in Washington D.C.

Pachyonychia Congenita Project

Published December 7, 2015 by NORD

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Connecting patients with Pachyonychia Congenita, PC Project says that it is “all about love”.

Be a Hero-Help NORD Help Patients Obtain Life-Saving Treatments

Published December 4, 2015 by NORD

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When you or a beloved family member is facing serious illness, the last thing you need to be concerned with is how you will pay for the medication.

Be a Hero: Help NORD Educate Current and Future Medical Professionals

Published December 2, 2015 by NORD

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Education has always been a key component of NORD’s mission and this year we expanded our outreach to two vitally important audiences – medical professionals and students preparing for health-related …

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National Brain Tumor Society

Published November 23, 2015 by NORD

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The National Brain Tumor Society Tumor is a non-profit organization whose mission is to inspire hope and provide leadership within the brain tumor community.

Cutis Laxa Internationale

Published November 16, 2015 by NORD

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Dedicated to breaking the isolation of patients and families affected by cutis laxa, a rare genetic disorder of the connective tissue.

CMTC-OVM

Published November 9, 2015 by NORD

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This week’s spotlight member is CMTC-OVM, an organization based in The Netherlands.

Giving Spotlight: Parents Thank NORD for Saving Daughter’s Life

Published November 9, 2015 by NORD

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Laurie and Chuck Eallonardo were thrilled at the birth of their twins, Jenna and Caden. Laurie felt happy and relieved that she had been able to carry them for 38 …

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The Guthy-Jackson Charitable Foundation

Published November 2, 2015 by NORD

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This week, the Guthy-Jackson Charitable Foundation is in the member spotlight!

Rare Disease News

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