The Global Genes Project Aims to Battle Rare Disease Through the ‘Vote4Hope’ Cam

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The Global Genes Project Aims to Battle Rare Disease Through the `Vote4Hope'

Campaign and Pepsi Refresh Competition

September 1, 2010

http://www.crdnetwork.org/blog/the-global-genes-project-aims-to-battle-rare-dise\

ase-through-the-vote4hope-campaign-and-pepsi-refresh-competition/

Over 15 Million Children in America Are Estimated To Suffer From 7000 Unique

Rare Diseases; Children Unite As `Ambassadors of Hope' To Win $250K Pepsi Grant

For The Global Genes Fund/

DANA POINT, CA – September 1, 2010 – All Kids Deserve To Have Hope For A Cure –

The `Vote4Hope' Pepsi Refresh Rare Disease Campaign starts today. The Children's

Rare Disease Network (www.crdnetwork.org) and The Global Genes Project

(www.globalgenesproject.org) are inviting the public, as well as caregivers,

family and friends of the millions of children who suffer from rare diseases and

disorders, to `Vote4Hope' throughout September during The Pepsi Refresh Project.

The `Vote4Hope' Rare Disease campaign is designed to help drive awareness for

the unmet medical needs of the global rare disease community, and to support the

development of the Global Genes Project. The Pepsi Refresh `Vote4Hope' campaign

opens today at http://www.refresheverything.com/fundhopeforsickkids and will

continue through September 30.

" We entered The Pepsi Refresh grant competition with the goal of continuing

education surrounding rare diseases and to generate the global awareness the

rare disease community deserves, " said Boice, founder and president,

Children's Rare Disease Network and the Global Genes Project. " Many rare

diseases affect small numbers of patients and because of the rarity of each

condition, the public is often unaware of these chronic and life threatening

conditions. However, collectively millions of people worldwide have rare

diseases and everyone knows an adult or child suffering from a rare condition. "

If the Global Genes Project wins The Pepsi Refresh grant competition, funding

will go to support further development of the Global Genes Fund. The Global

Genes Fund is an innovative platform, which promotes as number of rare disease

initiatives including `in-a child's-lifetime' research and therapy development.

The development of the Global Genes Fund will provide tremendous value to the

millions of children, families and rare disease organizations that support them.

Time To Refresh Rare Disease Facts

A staggering 250 million people worldwide are estimated to suffer from

approximately 7,000 different forms of rare diseases with the vast majority

having no therapies at all. In the United States, FDA statistics show that

approximately 350 new drugs have been developed for the entire rare disease

patient population since the passing of the Orphan Drug Act in 1983 despite

incentives put in place by the federal government.

According to the National Institutes of Health (NIH), 30 million Americans are

afflicted with a rare disease, or 1 in 10 people. The National Organization for

Rare Disorders (NORD) estimates that of the 30 million people in the United

States suffering from rare diseases, 50 percent or approximately 15 million, are

children. Many rare diseases appear early in life, and about 30 percent of

children with rare diseases will die before reaching their fifth birthday.

Rare Kids Become `Ambassadors of Hope'

Throughout the month of September and during the " Vote4Hope " Pepsi Refresh Rare

Disease Campaign, pictures, stories and videos of children living with rare

diseases will be featured on a daily basis on the Vote4Hope website:

http://www.vote4hope.org/.

Called the `Ambassadors of Hope', these children are representing the 7000

different rare conditions and suffer from diseases including:

Ataxia-Telangiectasia, Autosomal Recessive Polycystic Kidney disease, Batten

disease, Branchiootorenal Syndrome, Canavan disease, Cystic Fibrosis, Dravet

Syndrome, Duchenne Muscular Dystrophy, Fibrous Dysplasia, Joubert Syndrome,

Mitochondrial Encephalomyopathy, Niemann Pick Type C, Hutchinson–Gilford

Progeria, Spinal Muscular Atrophy, Subcortical Band Heterotopia, Tay-Sachs and

Type 2 Gaucher's disease. To submit a child with a rare disease to the

Ambassadors of Hope program, please visit the Vote4Hope website at

http://www.vote4hope.org/.

" The ongoing lack of treatments for thousands of rare diseases has created an

immense burden on the U.S. healthcare system and leaves millions of children and

their families in despair, " added Boice. " At the Global Genes Project, our focus

is on creating a unified voice and a platform for hope for this community, with

continued efforts on educating the public and our government leaders on the

importance of creating a national strategic plan for rare disease. "

About The Global Genes Project

The Global Genes Project is a campaign of the Children's Rare Disease Network

and is a grassroots effort with the goal to increase awareness about the

prevalence and lack of treatments for rare diseases worldwide. The Children's

Rare Disease Network is a registered 501c3 non-profit organization. For more

information, visit http://www.crdnetwork.org/ or

http://www.globalgenesproject.org.

About The Pepsi Refresh Project

The Pepsi Refresh Project is giving America the power to decide how to fund good

ideas, big and small, that help refresh our world. In an effort to support those

who generate innovative, optimistic ideas, the Pepsi Refresh Project

http://www.refresheverything.com, will award more than $20 million in 2010 to

move communities forward. Each month, The Pepsi Refresh Project accepts 1,000

ideas and asks America to choose which ideas will win a Pepsi Refresh Grant.

For more information contact:

Tanzella

Spark Public Relations

jacqueline@...

415-321-1889

Boice

Global Genes Project

nicoleb@...

949.248.RARE (7273)