Press Releases

Global Genes To Host Second Annual Patient Advocacy Summit

August 19, 2013

Sponsors include Amicus Therapeutics, BIO, Genzyme, Purdue Pharma, Vidara Therapeutics and Walgreens 

ALISO VIEJO, CA — August 19, 2013 — Patients, parents, advocates, clinicians and key stakeholders in the rare and genetic disease community will gather together on September 20th, 2013, at The Balboa Bay Club & Resort in Newport Beach, CA, to participate in the second annual RARE Patient Advocacy Summit™ being hosted by Global Genes | RARE Project.  The day-long event will begin at 8:30 am with registration and continental breakfast to be followed by a series of best practices panels and policy driven discussions.

The RARE Patient Advocacy Summit™ is being held in conjunction with Tribute to Champions of Hope™ Annual Gala on Saturday, September 21, 2013, which raises funds and awareness for rare and genetic diseases.  Sponsors of the RARE Patient Advocacy Summit™ include Amicus Therapeutics, BIO, Genzyme, Purdue Pharma, Vidara Therapeutics and Walgreens.

“A major challenge facing the entire rare and genetic disease community is the lack of an open forum to discuss common concerns that impact patients and families,” said Nicole Boice, President & Founder, Global Genes | RARE Project.  “The purpose of the Summit is to provide discussion, insights and tools to equip patients and their families and help them expand and refine their advocacy skills.”

Rare diseases affect 30 million people in the United States and over 250 million people globally.  It is estimated that only 5% of all rare diseases have an FDA-approved drug treatment, with less than 400 treatments approved for the nearly 7,000 rare and genetic diseases. According to estimates from the National Institutes of Health (NIH), at the current rate of FDA drug approvals, it will take 10,000 years to find therapies for people suffering from rare and genetic diseases.

RARE Patient Advocacy Summit™ sessions will tackle topics like caregiving, creating alliances between advocacy groups, coalition development, grassroots lobbying, fundraising and drug development.  Attendees will gain a wealth of knowledge by hearing from leading experts on social media, fundraising and public relations.  Rare Disease Legislative Advocates (RDLA), a collaborative organization designed to support the advocacy of all rare disease groups, will hold a special panel on understanding policy issues. Advocates will also have the opportunity to hear from special guest, Dr. Stephen C. Groft, Director, Office of Rare Diseases Research (ORDR) at the National Institutes of Health.

This year’s program will also engage attendees in open discussion and dialogue, tackling problems in an innovative approach through group problem solving.  Attendees will be encouraged to share their experiences with peers to create an expanded set of resources for the entire rare disease community.

Registration for the RARE Patient Advocacy Summit™ is $25 and is open to all rare and genetic disease patients, caregivers, family members and friends.   More information can be found at

Hotel and travel information for the RARE Patient Advocacy Summit™ is available at:




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About Global Genes | RARE Project

Global Genes | RARE Project is a leading rare and genetic disease patient advocacy organization. The Foundation’s mission is to unify the international rare and genetic disease community by providing connections and resources to ease the burdens of affected patients and their families.  Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes | RARE Project unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 250 million people worldwide. For more information, visit