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© 2011 Global Genes Project 2011-07 r8
R.A.R.E Project presents – The RARE Fund
RARE is not so RARE
US Only
living with
Rare Disease
35m
US Only
living with
Rare Disease
35m
Worldwide living with
cancer28m
Worldwide living with
cancer28m
US Only - living with
HIV/AIDS
1.2m
RARE is not so RARE
US Only
– 7,000 RARE Diseases
– 1 in 10 Americans
– 350M worldwide
– 7,000 RARE Diseases
– 1 in 10 Americans
– 350M worldwide
The Problem• Over 80% of Rare Diseases have no disease-
specific advocacy group or support
• Over past 25+ years, only 350 new drugs approved by FDA for all Rare Diseases combined
• Rare Disease early research funded by patient advocates/advocacy groups
• Currently Rare Disease funding is limited to small networks of families and friends
No catalyst for new investment!
The Solution – Awareness & MoneyRARE Fund™ - Two Facets• Micro-donation website and funding portal
– Broad public appeal – Gives general public an opportunity to donate– Modeled after successful micro-funding platforms;
• Razoo.com, crowdrise.com, giveforward.org, broadcause.com
– Create opportunity to tap ‘new money, new philanthropists’
• Corporate Fund & Global Genes Project Campaign– Provides opportunity for corporations to fund research– Impact on 1 in 10 Americans (350 million) is attractive– First time opportunity to fund ‘rare disease’research
R.A.R.E FUND™
R.A.R.E FUND™
Micro-Donation Website
• A novel approach to raising funds– Contemporary, multi-faceted, and engaging
• Open, trusting, and transparent– Facilitate broad general public donor involvement
• Presenting Research – Lay view and Research view
• Engaging new generation of philanthropists
• Catalyzing excitement around innovations in science
R.A.R.E. FUND™ - General
• Emphasis on improving the Rare Disease ecosystem– Generate/organize research profiles & disease
databases
– Fund peer reviewed cross-disease projects & infrastructure
– Impact policy, collaboration, and process
• Fund Innovations – with ‘in-their-lifetime’ impact
• Focus: To accelerate process, increase collaborations and improve efficiencies
R.A.R.E. Project• R.A.R.E. Projects three pronged
strategy:– Awareness & education – Community-building and empowerment– Funding in-their-lifetime Rare Disease research
• Supported by: – Industry: Pfizer, Life Technologies, Illumina, Shire,
Genzyme, BioMarin, BIO, PhRMA, NIH, etc– Advocacy: 450+ global organizations
• Acitivities: – Global Genes Project™, Childrens RARE Disease
Network™, RARE Blog™, RARE Fund™
