GlobalEpi Research Senior Scientists Ms. Kristen Adams and Ms. Stephanie Hikel have authored the featured cover story in the July 2015 issue of PM360: The Essential Resource for Pharma Marketers.
In “Sizing Up the Orphan Drug Market”, Ms. Adams and Ms. Hikel discuss important considerations and solutions for selecting epidemiological data that are the most valid, methodologically appropriate, and supportable data for orphan drug market sizing. According to PM360, “Big Pharma is moving full tilt into this growing market, but understanding its true size is challenging. Companies and marketers must know how faulty data and sizing sources can affect the future of the orphan market.”
Click here to read the article.
GlobalEpi Research is pleased to announce our membership in the RARE Corporate Alliance, a collaboration of rare disease stakeholders committed to advancing efforts benefiting the rare disease community and its constituents. The goal of the RARE Corporate Alliance is to help facilitate collaboration and information exchange among patients, patient advocacy organizations, industry, payers, policy makers, and regulatory agencies.
As a member of the RARE Corporate Alliance, GlobalEpi Research will provide the expertise and insight of Epidemiologists with decades of experience in rare diseases research and the design of patient registries and natural history studies. The availability of “research worthy” patient registries and natural history data can catalyze drug development, substantially reduce risk for industry, and provide opportunities for researchers, clinicians, and patients to gain valuable insights into the disease course and quality of life of affected patients and families.
GER President Dr. Shira Kramer moderated a Global Genes webinar entitled “Understanding Rare Disease Registries, Part 1″, which was attended by more than 170 members of the rare disease community. For a copy of the slides from today’s webinar, please click here: Webinar slides_Understanding Rare Disease Registries Part 1_07.31.13. Part 2 of the webinar series will be October 23, 2013, and registration is available at: http://globalgenes.org/webinars/.
July 31, 2013
GER President Dr. Shira Kramer moderated a Global Genes webinar entitled “Understanding Rare Disease Registries, Part 1″, which was attended by more than 170 members of the rare disease community. For a copy of the slides from today’s webinar, please click here: Webinar slides_Understanding Rare Disease Registries Part 1_07.31.13.
Part 2 of the webinar series will be October 23, 2013, and registration is available at: http://globalgenes.org/webinars/.
GER’s Shira Kramer and Stephanie Hikel will be attending the DIA 2013 49th Annual Meeting from June 23 – 26. Email firstname.lastname@example.org to set-up an appointment.
GER President, Dr. Shira Kramer, will be moderating an upcoming Global Genes | RARE Project webinar series entitled “Understanding Rare Disease Registries.” Part 1 of the series will be held on July 31, 2013, and Part 2 will be held on October 23, 2013. For more information and to register, visit:
GER is currently hiring for a new Director of Business Development and Strategic Initiatives. For more information on the position and how to apply, visit: http://globalepiresearch.com/careers/.
GlobalEpi Research has become a Rare Disease Day Partner, in recognition of the fact that rare diseases are an important public health issue, and as a pledge of GER’s dedication to promoting rare disease research and awareness in the US and worldwide.
For more information on Rare Disease Day, contact us at email@example.com, or visit the US Rare Disease Day website at: http://rarediseaseday.us/.
GER is now on Twitter! Follow us @GlobalEpi for the latest news, white papers, and syndicated content on patient registries and the rare disease community. https://twitter.com/GlobalEpi
Join GER in participating in Rare Disease Day 2013 at the National Institutes of Health (NIH) Campus in Bethesda, Maryland.
Register to attend in person or via webcast at: https://events-support.com/events/Rare_Disease_Day/page/243
GER joins the EPIRARE Network, an international collaborative group of rare disease researchers and stakeholders. The aims of the EPIRARE Network are to promote the sustainability and networking of rare disease registration activities; share views in building a common platform for registration activities devoted to research, public health, and other purposes; and to highlight the strengths and opportunities of linking rare disease registration activities, orphan drug post-marketing surveillance, and other important rare disease data sources.
Members of the GER staff are accepted for membership in ICORD, an international society for individuals active in rare diseases and/or orphan drugs. The ICORD mission is to improve the welfare of patients with rare diseases and their families world-wide through better knowledge, research, care, information, education and awareness. For more information about ICORD, visit: http://icord.se/.
Scientists from GER attend the Rare Diseases Clinical Research Network (RDCRN) 3rd Conference on Clinical Research for Rare Diseases. To connect with GER scientists attending this meeting, email firstname.lastname@example.org.
Scientists from GER attend Centric Health Resources’ 5th Annual Ultra Orphan Conference in St. Louis, Missouri. To connect with GER scientists attending this meeting, email email@example.com.
GlobalEpi Research relocates their headquarters to 111 Lake Front Drive, Hunt Valley, Maryland 21030.