Building Community Among Children with Rare Diseases: The Fighting H.A.R.D. Foundation

The Fighting HARD Foundation Rare diseases are difficult to face for a myriad of reasons. They can be financially burdensome, physically painful, and emotionally draining. Further, they can make patients…

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A Drug for Still’s Disease Has Been Approved in Europe
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A Drug for Still’s Disease Has Been Approved in Europe

A drug called Kineret has been approved by the European Commission in 28 European countries for the treatment of both adult-onset and juvenile-onset Still’s disease, reports Check Orphan. Still’s disease…

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This Organization is an Exemplar of Rare Patient Support
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This Organization is an Exemplar of Rare Patient Support

Every rare disease patient deserves an organization dedicated to working towards their specific condition. These organizations provide invaluable patient advocacy, information, support, and research funding for small communities that need…

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How to Stay Warm This Winter with CAPS
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How to Stay Warm This Winter with CAPS

Some auto-inflammatory disease symptoms are triggered by colder temperatures. Systemic Auto-inflammatory Disease Support (SAID) has several winter tips for people who suffer from these diseases. Examples of these diseases are…

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Se trata de “MARVEL” (no un cómic): molécula puedria tratar la Enfermedad de Muckle-Wells
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Se trata de “MARVEL” (no un cómic): molécula puedria tratar la Enfermedad de Muckle-Wells

Cuando veo "Marvel" y una imagen como la siguiente ... ... Veo los ingredientes de un superhéroe! "Un equipo de investigadores en el Trinity College de Dublín ha descubierto lo…

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Esta chica con Muckle-Wells está saltando de alegría después de estar libre de dolor
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Esta chica con Muckle-Wells está saltando de alegría después de estar libre de dolor

Para cualquier persona que sufre de dolor crónico, ya sabes lo que se siente. Si usted no ha tenido ese lujo, esto es lo que se siente: Uno se siente…

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