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™
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 BoiceFounder/President RARE [email protected] (RARE)
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