Global Genes | RARE Project To Host Second Annual Patient Advocacy Summit
ALISO VIEJO, Calif., Aug. 19, 2013
Sponsors include Amicus Therapeutics, BIO, Genzyme, Purdue Pharma, Vidara
Therapeutics and Walgreens
ALISO VIEJO, Calif., Aug. 19, 2013 /PRNewswire-USNewswire/ --Patients,
parents, advocates, clinicians and key stakeholders in the rare and genetic
disease community will gather together on September 20^th, 2013, atThe Balboa
Bay Club & Resortin Newport Beach, CA, to participate in the 2nd 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
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: http://globalgenes.org/2013_gala_summit_travel/.
Twitter: @GlobalGenes - https://twitter.com/GlobalGenes
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 http://globalgenes.org/.
SOURCE Global Genes | RARE Project
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