Patient and Community Partnership

Hosts annual meetings bringing together over 1,200 participants from 35+ countries, including researchers, clinicians, industry representatives, and patient advocates. The meetings facilitate presentation and peer feedback on unpublished research, feature over 80 speakers, and publish reports summarizing scientific advances and collaborations. Events are held both in-person and virtually, with recent meetings in 2025 and 2026.

Maintains a global biorepository with over 50,000 vials of biofluid samples (CSF, blood, urine), postmortem tissues from over 500 ALS cases, and induced pluripotent stem cell (iPSC) lines. Generates multi-omic data (whole-genome sequencing, RNA-seq, proteomics) linked to clinical records. Provides validated antibodies and ALS animal models with unrestricted access for researchers worldwide.

Sponsors targeted discussions and roundtables on emerging topics such as AI in drug discovery, with participation from major industry players including Roche, Lilly Ventures, and insitro, to foster innovation and collaboration across sectors.

58% of funded research consortia have advanced to drug discovery programs. Supported the development of 13 clinical trials through funded research projects, translating laboratory findings into viable treatment pathways.

Funds over 750 research grants in ALS research, investing more than $80 million, including $59.3 million allocated to 78 consortia. Allocates funding across key areas: 41% to understanding ALS biology and therapeutic targets, 25% to drug discovery, and 33% to biomarker development. Issues targeted funding opportunities for ALS biomarkers and in vivo target validation.

Generates and freely shares rich clinical and multi-omic datasets through its online Data Engine, enabling global research access. Ensures data from studies like the Global Natural History Study are immediately available to researchers worldwide.

Conducts research through 15 active global sites as part of the ALS Global Research Initiative (AGRI), enrolling 350 participants including individuals with ALS and healthy controls. Operates the Global Natural History Study, which provides immediate access to participant data and samples. Prioritizes diversity, with 36% non-Caucasian enrollment in this study and broader efforts to include greater ethnic, genetic, and geographic representation.

Provides scientists worldwide with no-strings-attached, expedited access to high-quality, standardized research tools, data, and expertise. Supports over 1,950 scientific partners globally with resources including data, models, antibodies, and technical support.

Hosts an annual awards program that recognizes digital health innovations addressing health disparities, reviewing over 100 case study submissions each year and maintaining a public database of winning and finalist case studies.

Develops and shares frameworks, recommendations, and real-world examples to support innovators in practicing techquity, including resources for equitable design, implementation, and procurement of health technology.

Conducts industry and patient-level research on techquity in partnership with Ipsos, published the "State of Patient Empowerment" report with external partners, and released a User Guide to Techquity in Healthcare as a resource for equitable digital health practices.

Operates the Ask Patients Lounge at the annual HLTH event, enabling one-on-one conversations between healthcare leaders and patients or caregivers to inform innovation with lived experience.

Provides financial support through opportunity grants and awards funding to initiatives that advance health equity, access, and transformation, including grants for underrepresented nurse innovators and the Techquity for Health Awards.

Runs a free, year-long virtual mentorship program that pairs mid-level to C-suite women and nonbinary healthcare professionals with senior executive mentors, having completed over 1,000 mentorships with more than 200 volunteer mentors and participants from 12 countries.

Maintains and operates a publicly accessible database showcasing digital health tools and programs designed with health equity at the center, populated with case studies from the Techquity for Health Awards.

Advocates for the ethical development, equitable delivery, and faster rollout of effective HIV prevention options—including PrEP, treatment as prevention (U=U), condoms, and testing—as part of a broader agenda for global health equity. Develops and advances national, regional, and international policy agendas in collaboration with partners.

Builds global advocacy capacity through training programs such as the AVAC Fellows and Advocacy Navigator initiatives, equipping emerging leaders—especially from affected communities—to influence HIV prevention research, policy, and implementation.

Funds partner organizations through subgrants to eliminate barriers to HIV vaccine development and access, supporting biomedical prevention research and advocacy efforts in the U.S. and Africa.