The document discusses various ways that nonprofit organizations partner with patients and the medical research community to advance research and drug development. It provides examples of how organizations fund research, develop tools and resources, facilitate clinical trials, advocate for policy changes, and build communities to accelerate the development of new treatments. Specific organizations highlighted include the Alzheimer's Drug Discovery Foundation, Juvenile Diabetes Research Foundation, Multiple Myeloma Research Foundation, ALS Therapy Development Institute, and Genetic Alliance.

1. Partnering with Patients Howard Fillit, MD Executive Director , Alzheimer’s Drug Discovery Foundation Richard Insel, MD Executive Vice President, Research , Juvenile Diabetes Research Foundation James C. O’Leary Chief Innovation Officer , Genetic Alliance Louise Perkins, PhD Chief Scientific Officer, Multiple Myeloma Research Foundation Steven Perrin, PhD Chief Executive Officer and Chief Scientific Officer , ALS Therapy Development Institute Kristin Schneeman - Chair Program Director, FasterCures

2. nonprofit think tank and catalyst for action that works across sectors and diseases to improve the effectiveness and efficiency of the medical research system

4. TRAIN Central Station www.fastercures.org/train

5. An effort designed to facilitate cross-sector collaborations needed to turn a scientific discovery into an accessible therapy. Be a part of an effort that brings together people with the expertise, experience, and creativity needed to transform the medical research system.

7. With over $140M raised to date, the MMRF serves as an end-to-end solution for drug development.

8. Implementation of business solutions to trial barriers led to MMRC trials opening 35% faster and robust trial enrollment. Trial Activation Enrollment 361 247 74 120

9. The MMRF Patient Navigator program aims to drive clinical trial accrual with specific benefits for late-stage trials. Program Highlights Up-to-date searchable database Trained clinical specialists Late-stage trials prioritized Site support Marketing Targeted communications to stage of disease and geography MMRF Newsletter articles, ads Ads in MMRC, cancer publications Social networking/communities

10. Accelerating Drug Discovery for Alzheimer’s Disease: The Alzheimer’s Drug Discovery Foundation

11. Accelerating Drug Discovery for Alzheimer’s Disease: ADDF Venture Philanthropy

12. Some Potential Advantages to Early Stage Biotechs of Venture Philanthropy Funding

13. Biotechnology Founders Program: CoMentis Leading Anti-Amyloid Therapy

14. Biotechnology Founders Program: CoMentis Leading Anti-Amyloid Therapy

15. Biotechnology Founders Program: Allon Therapeutics Leading Anti-tangle Therapy

16. ADDF Biotechnology Founders Program: Allon Therapeutics, Leading Anti-tangle Therapy Listed on the Toronto Exchange (NPC.TSX) 2005, current market capitalization around $50M Received return of note at time of IPO

18. ADDF Venture Philanthropy Fund Investments

21. Beta Cell Therapies Immune Therapies JDRF’s Industry Partners DIABECELL® Encapsulated Cell Replacement Therapy

22. JDRF’s Industry Partners Glucose Control Complications Therapies

23. JDRF’s Clinical Trial Awareness Activities: JDRF Type 1 Diabetes Clinical Trials Connection (www.trials.jdrf.org)

30. ALS-TDI Facilitates Clinical Translation De-Risk the Opportunity & Broker the Deal Clinical Development Study Disease  Pre-Clinical Development   Build Drug  Pre-Clinical Development Clinical Basic Research Drug Development Gap Find a Drug Target

32. Transforming Health through Genetics Promoting an Environment of Openness

34. DAO Demographics Characteristic N (%) Organization Age <5 years 2 (6) 5-10 years 13 (36) 11-20 years 15 (42) >20 years 6 (17) Paid Employees Yes 28 (76) Volunteer Network Yes 29 (81) Annual Budget <$100K 17 (49) $100K-$499K 11 (31) $500K-$999K 6 (17) $1M-$5M 1 (3) >$5M 1 (3)

35. DAO Involvement Types of Engagement N (%) Established Biorepository/registry 12 (67) Own Biorepository/registry 9 (53) Provide Financial Support 10 (56) Help Obtain Financial Support 10 (56) Recruit Participants 17 (94) Obtain Informed Consent 11 (61)

36. Sample Types Biorepository Collects N (%) Blood 13 (72) Tissue (Frozen) 10 (56) Tissue (Formalin) 9 (50) Cell Blocks 5 (28) Cell Lines 7 (39) Other Biological Material 3 (17) Desire to Collect other Types 13 (81)

37. Sample Use and Storage Characteristic N (%) Experiments DNA/genomics Analysis 9 (64) RNA Expression 1 (7) Protein/immunohistochemistry 2 (14) Other 5 (36) Users Research Consortium 5 (31) Any Qualified Researcher 12 (75) Other 5 (31) Costs Passed on to Researcher 9 (50) Location Nonprofit Organization 3 (21) Commercial Lab 3 (21) University/research Lab 8 (57) Government Lab 1 (7) Other 3 (21)

38. Disease Specific Organization Data and Sample Management Informed Consent Robust Clinical Information Sample Collection & Tracking Data and Sample Query Data Management Electronic & Paper Records Security & Access Control Patient Enrollment Disease Sample and Clinical Banking Biological Samples Clinical Information Web based Boot camps Manuals Workbooks Wikis Webinars

39. Demonstrating Private Access’ Technology to Transform Patient Recruitment