Transcript RAREFundvopen.ppt

R.A.R.E Project
presents – The RARE Fund
© 2011 Global Genes Project
2011-07 r8
RARE is not so RARE
US Only
living with
Rare Disease
35m
Worldwide
living with
cancer
28m
1.2m
US Only - living with
HIV/AIDS
RARE is not so RARE
– 7,000 RARE Diseases
US Only
– 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 & Money
RARE 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™
Contact Information
• Nicole Boice
Founder/President RARE Project
[email protected]
949.248.7273 (RARE)