Patient Advocacy Summit: What Will You Learn? Register Now.

July 10, 2014

What if you could learn EVERYTHING you needed to know about being a patient advocate in just two days? What if you could learn how to be prepared, proactive, and productive in your efforts to better the lives of those with rare disease? What if you could be an advocate with the know-how to lobby congress and effect change? What if you felt you really had the ability to reach out to the largest pharmaceutical companies in the world—and form a powerful relationship to bring drugs to patients now?

This is what over 200 participants will be learning in-person, and over 5,000 via Livestream during the Global Gene’s 2014 RARE Patient Advocacy Summit, September 11-12, at the Hyatt Regency Resort & Spa in beautiful Huntington Beach, CA.

Will you join us?

During our third annual summit this coming September, participants can expect more tools, experts, and exploration than ever before.

“Everything has changed,” says Nicole Boice, Founder and President of Global Genes. “Our feedback from the last few years has been positive, but what we now understand is how much more depth our audience wants and needs on topics related to their rare disease journey—and we’re determined and ready to give them that.”

This year’s sessions, lead by an extraordinary team of experts include modules on Caregiving: Strategies for Staying Afloat, the E-Patient Revolution, Patient-Centered Benefit-Risk Assessment, making your organization an “Unstoppable Charity,” Lobbying at the State and Federal Level, and Transition & Transformation with Rare Disease from Adolescence to Adulthood.

Our 2014 summit will now includes “Deep Dives” or branched off discussions that will allow small groups to interact with industry leaders to help them go more deeply into the content of each session.

“There will be more freedom to learn, to ask questions and to take our time really cracking open the heart of some of these difficult topics like collaboration in drug development, lobbying for change and structuring non-profits to meet their ultimate potential, ” Nicole continues.

Also new this year will be the inclusion of Science Briefs – 15 minute science pitches with 5 minutes of Q&A, discussing some of the most promising Innovations in Science. Progressive science driven organizations will have a chance to present their new approaches to research and drug development, that are vital to members of the rare disease community. This will give rare disease non-profits and patient advocates that are involved in funding research a first look at some of the innovators working to bring drugs to market more quickly for those in the fight against rare disease. A few of this year’s presenters include Project Violet – Seattle based non-profit, Immusoft, and Bay Area Biotech.

Can’t attend in person? Our new Livestream component will allow up to 5,000 interested advocates from around the globe to attend virtually via their home. The event will be broadcast live with opportunities for patients to participate from afar using social media such as twitter and Facebook.

This year’s exclusive content is presented in partnership with:

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Health 2.0 | Health 2.0 has introduced over 500 technology companies to the world stage, hosted more than 15,000 attendees at our conferences and code-a-thons, awarded over $6,759,000 in prizes through our developer challenge program and inspired the formation of 70 new chapters in cities around the globe. Health 2.0 promotes, showcases and catalyzes new technologies in health care. We do this through a worldwide series of conferences, code-a-thons, prize challenges, and more. We also have the leading market intelligence on new health technology companies. |

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Smart Patients | Smart Patients is an online community where patients and caregivers learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience. Smart Patients believe patients are the most underutilized resource in healthcare. They have watched patients become experts in their conditions — and they see that their knowledge improves the care they receive. With the right tools, you and other patients can do the same. |

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FasterCures | FasterCures, a center of the Milken Institute, is an action tank driven by a singular goal — to save lives by speeding up and improving the medical research system. To do this, the organization must save time in the way they search for discoveries, turn discoveries in therapies and bring therapies to patients. Fastercures objectively figures out what’s working and what isn’t in the research ecosystem, and share that knowledge so that every sector – and every patient – can benefit. |

We would also like to thank our generous sponsors including:


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Pfizer| Pfizer works to apply science and their global resources to bring therapies to people that extend and significantly improve their lives. They strive to set the standard for quality, safety and value in the discovery, development and manufacture of health care products for those with rare diseases. Every day, Pfizer colleagues work across developed and emerging markets to advance wellness, prevention, treatments and cures that challenge the most feared diseases of our time. Consistent with their responsibility as one of the world’s premier innovative biopharmaceutical companies, Pfizer collaborates with health care providers, governments and local communities to support and expand access to reliable, affordable health care around the world. For more than 150 years, Pfizer has worked to make a difference for all who rely on them.

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Walgreens | There’s a way to lend a hand – and since Walgreens was founded in 1901, the company and its employees have recognized the connection between strong communities and good business. Walgreens ( vision is to be the first choice for health and daily living for everyone in America, and beyond. Each day, Walgreens provides more than 6 million customers the most convenient, multichannel access to consumer goods and services and trusted, cost-effective pharmacy, health and wellness services and advice in communities across America. The company operates 8,217 drugstores in all 50 states, the District of Columbia, Puerto Rico and the U.S. Virgin Islands.

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Shire | There’s a simple purpose that sits at the heart of Shire’s business: to enable people with life-altering conditions to lead better lives.  This means a focus on developing treatments for conditions where the impact of their medicines can make an immediate and tangible difference for patients.  Shire Pharmaceuticals provides treatments in Neuroscience, Rare Diseases, Gastrointestinal, and Internal Medicine.  This might be a therapy to treat an extremely rare and life-threatening disease like Hunter syndrome or Fabry disease; or a medicine for a specialist condition like ADHD or ulcerative colitis which if not treated effectively, can dramatically affect the lives of the patient and their whole family. Their two strategic priorities are to drive optimum performance of their existing products, enabling access to these medicines for patients today; and building their pipeline through research and development (R&D) and business development (BD), delivering access in the future for patients.

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Alexion | Alexion Pharmaceuticals, Inc. is a global biopharmaceutical company focused on developing and delivering life-transforming therapies for patients with severe and life-threatening rare diseases. Patients with these devastating diseases often have no effective treatment options, and they and their families suffer with little hope. Alexion’s global headquarters and research operations are located in Cheshire, Conn. Alexion’s more than 1,900 employees serve patients in nearly 50 countries. They are planning to move our global headquarters to New Haven, CT in 2015.


To view the full schedule of events click here.

To register to attend the summit, in person, click here.

To register to attend the summit virtually, through Livestream, click here.

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