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Neonatal Onset Multisystem Inflammatory Disease

What is Neonatal Onset Multisystem Inflammatory Disease?

Neonatal Onset Multisystem Inflammatory Disease is a rare genetic disorder which causes inflammation in multiple parts of the body.

 

Neonatal Onset Multisystem Inflammatory Disease is a rare genetic disorder which causes inflammation in multiple parts of the body.
100.0http://www.orpha.net/data/patho/Pro/en/CINCA-FRenPro3395.pdf
Synonyms for Neonatal Onset Multisystem Inflammatory Disease has not been added yet.
Cause of Neonatal Onset Multisystem Inflammatory Disease has not been added yet.
Symptoms for Neonatal Onset Multisystem Inflammatory Disease has not been added yet.
Diagnosis of Neonatal Onset Multisystem Inflammatory Disease has not been added yet.
Diagnostic tests of Neonatal Onset Multisystem Inflammatory Disease has not been added yet
Treatments of Neonatal Onset Multisystem Inflammatory Disease has not been added yet.
Prognosis of Neonatal Onset Multisystem Inflammatory Disease has not been added yet.
Tips or Suggestions of Neonatal Onset Multisystem Inflammatory Disease has not been added yet.
References of Neonatal Onset Multisystem Inflammatory Disease has not been added yet.
Video Created by stopcaidnow
Last updated 3 Mar 2011, 04:19 AM

Posted by stopcaidnow
3 Mar 2011, 04:19 AM

If anyone is interested in sharing your child's photo or story please email me at StopCAIDnow@aol.com Mike Quick(5x pro bowler for the NFL) and I are producing a video for the Foundations homepage. We welcome your VOICE and pictures to be added to the video. We will also use the pictures or videos at the Gala. The Gala will be covered by the media, so if you do not want the exposure please do not send your picture. We will not list any names or personal information on either the video for the homepage or the Gala. If you send in a video of yourself talking and choose to say who you are and what your child has, that will be the only way we will share your personal information. We want to share your story, your pictures the way you want it to be shared with the world. Thank you, StopCAIDnow,Inc.

NOMID community Created by stopcaidnow
Last updated 12 Feb 2011, 04:56 AM

Posted by stopcaidnow
12 Feb 2011, 04:56 AM

I would like to introduce my Foundation to you and direct you to the web page www.stopcaidnow.com I am sure many of you will be excited to learn about Project 1. it will help so many of our children suffering from CAID(Childhood Auto Inflammatory Diseases) Lisa

Community Resources
Title Description Date Link
NOMID ALLIANCE

The NOMID Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with CAPS (Cryopyrin-Associated Periodic Syndromes) and other autoinflammatory syndromes.

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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Calgarian, communicator, designer, geek, health care advocate & mom of 2 special needs kids. Fond of knitting, crochet, cats & coffee - lots of coffee.
I am the President and Founder of StopCAIDnow,Inc. (www.stopcaidnow.com), in process of becoming a 501 ©(3) non-profit dedicated to educate, awareness diverse genetic testing, genomics and fundrais...
I have a Grandson who has NOMID
I am the President and Founder of The NOMID Alliance, (www.nomidalliance.net), a 501 (c)(3) non-profit dedicated to improving awareness, care and treatment for patients with Cryopyrin-Associated Pe...
Parent of two children with rare congenital health conditions (thalassemia and ventricular septal defect). Husband diagnosed later in life with rare motility disorder (achalasia). President of Ca...

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Video

Created by stopcaidnow | Last updated 3 Mar 2011, 04:19 AM

NOMID community

Created by stopcaidnow | Last updated 12 Feb 2011, 04:56 AM


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