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Rare disease-focused foundations: start small, think big | Rare disease matters

http://www.rarediseasematters.org/2013/09/rare-disease-focused-foundations-start-small-think-big

Recognizing and understanding the value of patient-driven innovation. Why Rare disease matters. Patient-initiated research foundations: A source of funding, but more importantly a continuous source of inspiration. RANKL cytokine: potential cure for rare bone disease. New book chapter on Translating rare disease research into potential therapies →. Rare disease-focused foundations: start small, think big. Need for a YoungEUCERD platform to help securing the future of rare diseases. Patient-initiated resea...

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Care | Rare disease matters

http://www.rarediseasematters.org/category/care

Recognizing and understanding the value of patient-driven innovation. Why Rare disease matters. Patient-initiated research foundations: A source of funding, but more importantly a continuous source of inspiration. Closing a gap for rare diseases or simply a bridge too far Last weekend I opened my Saturday newspaper and was captivated by a rather intriguing story about human head transplantation. The question I was left with after reading the … Continue reading →. To cure is good, to care is .

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Publications | Rare disease matters

http://www.rarediseasematters.org/mission-vision/publications

Recognizing and understanding the value of patient-driven innovation. Why Rare disease matters. Patient-initiated research foundations: A source of funding, but more importantly a continuous source of inspiration. Heemstra HE, de Vrueh RL. Van Weely S, Büller HA, Leufkens HG (2008) Predictors of orphan drug approval in the European Union. Eur J Clin Pharmacol. Heemstra HE, de Vrueh RL. Van Weely S, Büller HA, Leufkens HG (2008) Orphan drug development across Europe: bottlenecks and opportunities. Putzeis...

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Why rare disease matters | Rare disease matters

http://www.rarediseasematters.org/why-rare-disease-matters

Recognizing and understanding the value of patient-driven innovation. Why Rare disease matters. Patient-initiated research foundations: A source of funding, but more importantly a continuous source of inspiration. Why Rare disease matters. The aim of Rare Disease Matters is to recognize and enhance understanding of the added-value that patients or their carers have in moving forward the translational process from research into product development or healthcare innovation. Knossos labyrinth on Silver coin.

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General | Rare disease matters

http://www.rarediseasematters.org/category/general

Recognizing and understanding the value of patient-driven innovation. Why Rare disease matters. Patient-initiated research foundations: A source of funding, but more importantly a continuous source of inspiration. We will have the tools and techniques at our disposal to diagnose all the rare disorders if we wish to do so. These diagnoses will be attained in a matter of weeks instead of years, and close to the onset … Continue reading →. Rarediseasematters.org initiates e-newsletter service.

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exceptionally rare diseases orphan drug development | Rare disease matters

http://www.rarediseasematters.org/2013/11/new-in-ojrd-drug-development-for-exceptionally-rare-diseases-tough-but-possible

Recognizing and understanding the value of patient-driven innovation. Why Rare disease matters. Patient-initiated research foundations: A source of funding, but more importantly a continuous source of inspiration. New book chapter on Translating rare disease research into potential therapies. Importance rare disease patient advocacy recognized in scientific literature →. New in OJRD: Drug development for exceptionally rare diseases: tough but possible. To continue to article- OJRD. China has joined the f...

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About | Rare disease matters

http://www.rarediseasematters.org/mission-vision

Recognizing and understanding the value of patient-driven innovation. Why Rare disease matters. Patient-initiated research foundations: A source of funding, but more importantly a continuous source of inspiration. The mission of Rare disease matters. Is to recognize and enhance the understanding of the key role of patients or their carers in the rare disease research and orphan drug development process. The vision of Rare disease matters. Leave a Reply Cancel reply. Required fields are marked *.

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Role of patient in rare disease research and orphan drug development | Rare disease matters

http://www.rarediseasematters.org/role-of-patient

Recognizing and understanding the value of patient-driven innovation. Why Rare disease matters. Patient-initiated research foundations: A source of funding, but more importantly a continuous source of inspiration. Nowadays, the role of rare disease patients in rare disease research and orphan drug development is enormous and at all stages of the drug innovation cycle: from bench to bed and from bed to bench. In the US as well as EU an orphan designation has been granted for the product. Finally, the AKUs...

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Rare disease advocates moving into biotech | Rare disease matters

http://www.rarediseasematters.org/2014/04/rare-disease-advocates-moving-into-biotech

Recognizing and understanding the value of patient-driven innovation. Why Rare disease matters. Patient-initiated research foundations: A source of funding, but more importantly a continuous source of inspiration. Importance rare disease patient advocacy recognized in scientific literature. Regulators move patient engagement to the next level: benefit-risk assessment →. Rare disease advocates moving into biotech. Therapy developed by patients for patients. 8220; They are not the only ones…. The most well...

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Pharmaceutical Innovation | Rare disease matters

http://www.rarediseasematters.org/category/pharmaceutical-innovation

Recognizing and understanding the value of patient-driven innovation. Why Rare disease matters. Patient-initiated research foundations: A source of funding, but more importantly a continuous source of inspiration. Category Archives: pharmaceutical innovation. Posts related to pharmaceutical innovation. Regulators move patient engagement to the next level: benefit-risk assessment. Rare disease advocates moving into biotech. Yesterday evening Bernard Muller and Robbert Jan Stuit, both diagnosed with ALS, a...