Aktivitäten in der letzten Zeit in der Gemeinschaft CAPS

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  CAPS patients in the US
  topic, publiziert vor 3 Tage

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  The NOMID Alliance is trying to plan regional picnics for patients-feedback needed ASAP:
  http://www.facebook.com/note.php?note_id=181940621871449

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  Getting information on CAPS
  topic, publiziert vor 5 Tage

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  The National Institutes of Health have Genetic and Rare Disease (GARD) Information specialists that may be able to help you find information.

  The GARD Information Center does not provide genetic counseling and does not offer diagnostic testing, referrals, medical treatment or advice.

  Ther...

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  Canakinumab (Ilaris) muckle wells
  topic, publiziert vor 3 Monate

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  Hi there.
  My name is Alison and I would love to here from who is on Canakinumab (Ilaris) I'm on it, and next month will be my 5th dose. Also, if you have Muckle Wells, how has is your life improved?

  I really suffered with the rash, sore eyes and joint pains which had a major effect on my ...

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  Muckle wells
  topic, publiziert vor 5 Monate

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  Hi,
  My seven year old daughter has been diagnosed with muckle wells syndrome, she started on Canakinumab in December 2010. I am wanting to find out more information about Muckle Wells, if anyone can help that would be appreciated.

  Many thanks

  Rachel Tansley

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  Neue Webseite für die Suche nach klinischen Studien
  topic, publiziert vor 5 Monate

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  Das EU-Register für klinische Studien (https://www.clinicaltrialsregister.eu) ist gestern von der Europäischen Arzneimittelagentur gestartet worden. Das Onlineregister gibt zum ersten Mal öffentlichen Zugang zu Informationen über interventionelle klinische Studien für Arzneimittel, die in den 27 ...

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  House MD TV show featured CAPS on the show on Rare Disease Day
  topic, publiziert vor 5 Monate

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  Dear All,

  Happy Rare Disease Day! I found out this evening from a patient in an earlier time zone that House MD, a dramatic "medical" television show in the US featured a diagnosis of CAPS in the episode "Recession Proof" that aired today, on Rare Disease Day. I believe they must have been i...

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  Experiences with Medication Access, and Treatment for Autoinflammatory Diseases.
  topic, publiziert vor 6 Monate

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  The NOMID Alliance launched a confidential survey to gather information about patient experiences with CAPS in honor of Rare Disease Day's theme of Health Inequality to seek more insight on how patients with autoinflammatory diseases obtain medications and treatment for their disease.

  We hav...

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  Rare Disease Day
  topic, publiziert vor 6 Monate

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  Hi,
  Hope you have an enjoyable Rare Disease Day.

  Live streaming of the Brussels Rare Disease Day event Monday from 9am-5pm CET. The theme is "Rare but equal" - EU Policy makers and patients confront the inequalities faced by Rare Disease patients and caregivers

  www.livestream.com/eurordis

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  Has anyone ever been denied coverage for CAPS medications from their insurance? Please respond
  topic, publiziert vor 6 Monate

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  For Rare Disease Day, I need some data on how many pts have had challenges with getting prescriptions now, or in the past for CAPS, or other autoinflammatory diseases. Please email me at sit[email protected] If you have ever been denied a med. (FDA or EMEA- approved, or off-label use m...

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  This is a nice article about a patient with NOMID that is helping raise awareness for CAPS for Ra...
  topic, publiziert vor 6 Monate

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  I wanted to share this news article that was shared on the US Rare Disease Day facebook group. It is a wonderful story about a teen with NOMID, a form of CAPS, and it is inspiring.

  Please read more about her story here in this article: http://lexch.com/articles/2011/02/14/news/regional/doc4...