© 2011 Global Genes Project 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 cancer 28m Worldwide living with cancer 28m 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 & 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 (RARE)