Global Genes’ RARE Blog has been reimagined to bring more opportunities for rare disease patients to learn and stay informed on important issues with a team of new contributors and subject-matter experts within the rare disease community
ALISO VIEJO, Calif., October 27, 2014—The RARE Daily is a brand new, reader-friendly, online news magazine and source for the latest information in the rare disease community–offering multiple channels of information on everything from innovations in research, policy, clinical trials and first-hand stories from patients, clinicians and other rare disease stakeholders.
“The new format of the RARE Daily provides access to news about rare disease that affects our community directly, in a more concise way.” said Managing Editor, Ilana Jacqueline. “Readers will now be able to find exactly what they’re looking for with easier navigation and search functionality.”
The RARE Daily will be the one-stop-shop for all up-to-the-minute rare disease news. With a new design created by design firm, Crowd Favorite, a news ticker has been added to the header that will scroll through the latest articles from multiple sources and pull content relevant to rare disease patients.
Readers can also look forward to interviews with industry professionals and subject-matter experts, recaps on big events like World Orphan Drug Congress, the BIO International Convention, various NIH/FDA events, among many others. The RARE Daily also opens doors to new contributors to share expertise and educate advocates on a variety of topics that will help foster activism for rare disease.
The RARE Daily will also be home to a weekly podcast series hosted by Daniel Levine–science journalist, author, and editor of the Burrill Report. Listeners can expect engaging dialogue with biotech and pharmaceutical leaders, legislators, science and technology innovators and healthcare experts.
A hand-picked group of experts will be joining the blogging team to share their expertise in advice columns, how-to articles, and stories of their own personal struggles coping with complicated health issues.
Among these bloggers include Business from Bed author Joan Friedlander, Joy H. Selak, PhD author of You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, Shelley Peterman Schwarz author of multiple titles on handling accessibility and creator of MakingLifeEasier.com, Carri Levy, Producer at Behind the Mystery which airs on Lifetime television, Dr. Harry Gould, an expert on pain management, Kevin Alexander, patient and producer of PKULife.tv, as well as Narcolepsy Advocate and author of Wide Awake and Dreaming, Julie Flygare, with new contributors being added weekly.
“The Global Genes RARE Blog was originally intended to be community resource providing a platform for rare disease patients to voice their stories. Now based on our experience working with patients and advocates we realized that this community needs greater access to information, news, and insights,” said Nicole Boice, Founder & CEO at Global Genes. “With the re-launch of our blog as the RARE Daily, we’re bringing even more value to this community with the addition of these new expert columnists and hard-hitting content from the rare disease world.”
Global Genes will continue to welcome new contributors to the RARE Daily throughout the year. For more information, please visit www.globalgenes.org/RAREDaily.
Global Genes™ – Allies in Rare Disease
Global Genesis a leading rare disease patient advocacy organization. The group’s mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections to people and resources, and through investment in technologies that will positively impact affected patients and families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.
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