Tag Archives: patient

World Rare Disease Day Celebrates Patient Advocacy and Activism Around The Globe

Global-Genes

Global Genes™ and the identifiable Blue Denim Genes Ribbon™ provides opportunity to show support and help build awareness Global Genes, a leading patient advocacy organization with the mission to eliminate the challenges of rare disease, is inviting industry partners to support the eighth annual World Rare Disease Day. World Rare Disease Day is a day of advocacy to call attention to rare disease in the United States and around the globe. Created by European organization Read More >

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Attacks on Venture Philanthropy Miss Mark Badly

Jim Greenwood

In a highly problematic op-ed in today’s New York Times, freelance journalist Llewellyn Hinkes-Jones attacked venture philanthropy and patient foundation funding of medical research, which has become a valuable source of funding for diseases which may not otherwise receive research dollars. Venture philanthropy organizations bring a singular focus and drive to the process of getting promising therapies from the laboratory bench to the patient as quickly and efficiently as possible, bringing hope – and results – to Read More >

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BIO Patient & Health Advocacy Summit: The Power of Partnerships

patient-summit-4

This week, the BIO Patient & Health Advocacy Summit powered partnerships in the industry to advance drug discovery by bringing together patient advocacy organizations, government agencies and industry leaders to discuss how to accelerate R&D, preserve patient access, leverage data and build collaborations focused on empowering patients. The rallying cry that reverberated throughout the event and over Twitter seemed clear from the beginning and Paul Hastings, Chairman and CEO of OncoMed Pharmaceuticals, Inc. captured it Read More >

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Patient and Venture Philanthropy Groups Presenting at 2014 BIO Investor Forum

BIO Investor Forum

BIO’s alliance development team works to foster collaboration between the biotech industry and nonprofit disease foundations. In recent years, many nonprofit foundations have become more engaged in the drug development process – whether they have created clinical trial recruitment tools, established a disease registry, or funded emerging biotech companies. Recognizing the value of these initiatives to expedite research and drug development, BIO provides opportunities for venture philanthropies and patient organizations to connect with BIO members Read More >

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Mito What???

Liz-Kennerly-115x76

Mitochondrial Disease: The Most Common Disease You’ve Probably Never Heard of… About 20 years ago, mitochondrial disease was virtually unheard of.  Just 10 years ago, it was considered rare. Today, according to NORD, a disease is considered rare when less than 200,000 people are affected.  Mitochondrial disease is not a single disease, but rather an entire umbrella of rare diseases.  For example, Alpers disease and Barth syndrome are very different and rare forms of mitochondrial Read More >

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