Mark Egly Foundation
  • Why We Exist
    Our Mission
    Our PromiseOur ImpactOur AgendaMark's StoryMark's PatentCurrent Partnerships
    Standard of Care
    What is the SOCChanging the SOCOur Research StrategyKey InitiativesNews
    Alpha1 Antitrypsin
    State of the FieldOur Research StrategyKey Research InitiativesResearch News
  • Understanding Alpha1
    About Alpha1
    What is Alpha1What is Alpha1 Antitrypsin DeficiencySymptomsMedication & TreatmentsRelated ConditionsAge Relevance to Diagnosis
    Alpha1 Journey
    Newly Diagnose ResourcesAlpha1 360Building a Support TeamWork & Financial ConcernsRelationshipsMental & Physical Health
    Education & Inspiration
    Alpha1 and You EventsAsk the MDWebinarsPodcastsBooks & ResourcesAlpha1 Friend Network
  • For Researchers
    Apply for Grants
    What We FundFunding OpportunitiesWorking with UsFunded Studies
  • Take Action
    Donate
    Donate NowMonthly Giving ProgramWays to GiveIn TributeEmployee GivingPlanned Giving
    Advocate
    Contact Your PolicymakersOur Public Policy PrioritiesAdvocacy ResourcesPolicy Updates

Current Partnerships

Collaborating to Accelerate Discovery and Save Lives

The Mark Egly Foundation believes that transformative change happens through collaboration. We actively partner with healthcare providers, researchers, institutions, and organizations to rapidly disseminate Mark Egly's groundbreaking discoveries about Alpha-1 Antitrypsin and ensure these insights reach those who need them most.

Our Partnership Mission: Speed the translation of research discoveries into clinical practice, expand access to diagnosis and treatment, and build a global network of AATD experts committed to changing medicine.


Why Partnerships Matter

The Challenge We Face Together

Mark's discoveries reveal that Alpha-1 Antitrypsin deficiency and dysfunction could be affecting:

  • Millions in the United States - Far beyond the current 10,000-15,000 diagnosed cases
  • Up to 15% of the global population - Either through genetic deficiency, carrier states, or functional deficiency
  • 152+ autoimmune diseases - Previously unrecognized connections
  • Cancer patients - Inflammation-driven progression and metastasis
  • Neurodegenerative diseases - Alzheimer's, ALS, MS, and Parkinson's

No single organization can tackle this alone. Success requires coordinated effort across specialties, institutions, and nations.

What Partnerships Enable

Accelerated Knowledge Dissemination

  • Reaching physicians across multiple specialties simultaneously
  • Training thousands of healthcare providers efficiently
  • Translating research into practice guidelines rapidly
  • Building consensus for clinical adoption

Enhanced Research Capabilities

  • Multi-center clinical trials
  • Large-scale patient registries
  • Diverse expertise and perspectives
  • Shared resources and infrastructure

Expanded Patient Access

  • Broader geographic coverage
  • Specialized care networks
  • Testing and treatment accessibility
  • Support services and resources

Greater Impact

  • Amplified messaging and awareness
  • Combined advocacy power
  • Shared best practices
  • Systemic healthcare transformation

Current Partnership Categories

1. Physician Partnerships

Individual Clinician Collaborations

We've established partnerships with forward-thinking physicians across multiple specialties who recognize the profound implications of Mark's discoveries.

Specialties Engaged:

  • Pulmonology - COPD and emphysema specialists
  • Hepatology - Liver disease experts
  • Rheumatology - Autoimmune disease physicians
  • Neurology - Neuroinflammation specialists
  • Oncology - Cancer prevention and treatment
  • Primary Care - First-line screening and diagnosis
  • Genetics - Counseling and testing experts
  • Immunology - Inflammatory disease researchers

What These Partnerships Look Like:

Knowledge Exchange

  • Regular communication about patient cases
  • Sharing treatment outcomes and insights
  • Collaborative problem-solving on complex cases
  • Co-development of clinical protocols

Patient Care Enhancement

  • Referral networks for specialized care
  • Consultation services for challenging cases
  • Second opinions and treatment planning
  • Access to clinical trials and research

Education and Training

  • Peer-to-peer teaching opportunities
  • Case presentations at conferences
  • Grand rounds and lectures
  • Mentorship for less experienced colleagues

Research Collaboration

  • Case study documentation
  • Clinical trial participation
  • Natural history studies
  • Outcome tracking and reporting

2. Academic and Research Partnerships

University Medical Centers

While we're building our network, we're engaging with academic institutions that have:

  • Research infrastructure for clinical trials
  • Medical student and resident teaching programs
  • Specialized AATD expertise
  • Commitment to advancing rare disease research

Partnership Activities:

Research Collaboration

  • Joint research projects on AAT applications
  • Access to institutional resources and expertise
  • Student and postdoc training opportunities
  • Publication and dissemination support

Clinical Innovation

  • Novel treatment protocol development
  • Biomarker discovery and validation
  • Diagnostic tool advancement
  • Outcome measurement studies

Education Integration

  • AATD curriculum development
  • Student research projects
  • Clinical rotation experiences
  • Continuing medical education programs

3. Clinical Resource Centers (CRCs)

Specialized AATD Care Facilities

We support and collaborate with Clinical Resource Centers designated by the Alpha-1 Foundation, which provide comprehensive multidisciplinary care for AATD patients.

CRC Network Benefits:

  • Expert diagnosis and management
  • Access to augmentation therapy
  • Genetic counseling services
  • Clinical trial opportunities
  • Patient education and support

Our Collaboration:

  • Sharing Mark's research findings
  • Supporting expanded diagnostic criteria
  • Promoting systemic care approaches
  • Facilitating treatment innovation

4. Patient Advocacy Partnerships

Alpha-1 Foundation

We work alongside the Alpha-1 Foundation, the leading organization dedicated to finding a cure for Alpha-1 and improving lives of those affected.

Complementary Missions:

  • Alpha-1 Foundation: Research funding, patient support, clinical infrastructure
  • Mark Egly Foundation: Expanding understanding of AAT's role in multiple diseases, changing standards of care, prevention focus

Areas of Collaboration:

  • Research symposia and conferences
  • Patient education and awareness
  • Clinical guideline advocacy
  • Policy and regulatory engagement
  • International outreach

Other Patient Organizations

  • Autoimmune disease advocacy groups
  • Cancer prevention organizations
  • Rare disease alliances
  • Patient-centered research networks

5. Pharmaceutical and Biotech Partnerships

Industry Collaboration for Innovation

Current Engagement:

  • Companies developing alternative AAT production methods
  • Diagnostic test manufacturers
  • Gene therapy developers
  • Biomarker discovery firms

Partnership Objectives:

Alternative Production Development

  • Plant-based AAT manufacturing
  • Recombinant production optimization
  • Gene therapy advancement
  • Cost reduction and scalability

Diagnostic Innovation

  • Point-of-care testing devices
  • At-home testing kits
  • Functional AAT assays
  • Rapid genotyping methods

Therapeutic Development

  • Novel AAT formulations
  • Extended half-life variants
  • Combination therapies
  • Expanded indication studies

Ethical Partnership Framework:

  • Patient benefit prioritized over profit
  • Affordable access commitments
  • Transparent research practices
  • Collaborative not proprietary approach

6. Professional Medical Organizations

Building Consensus for Change

Current and Target Partnerships:

  • American Thoracic Society (ATS)
  • European Respiratory Society (ERS)
  • American College of Rheumatology (ACR)
  • American Association for the Study of Liver Diseases (AASLD)
  • American Academy of Neurology (AAN)
  • American Cancer Society
  • Numerous specialty organizations

Partnership Goals:

  • Clinical practice guideline updates
  • Consensus statement development
  • Conference presentation opportunities
  • Journal publication support
  • Policy advocacy collaboration

7. Medical Education Partnerships

Training the Next Generation

Medical Schools

  • Curriculum development support
  • Guest lectures and presentations
  • Student research opportunities
  • Teaching materials and resources

Residency and Fellowship Programs

  • Specialty-specific training modules
  • Clinical case discussions
  • Research collaboration
  • Career development support

Continuing Medical Education (CME) Providers

  • Accredited course development
  • Online learning platforms
  • Conference and symposia
  • Certification programs

The "Uniting Doctors" Initiative

Building a Global Physician Network

Vision: Create a worldwide community of physicians knowledgeable about AATD and committed to early diagnosis, comprehensive treatment, and clinical innovation.

Network Features:

Online Platform

  • Discussion forums for case collaboration
  • Resource library of protocols and guidelines
  • Research updates and news
  • Clinical trial postings

Virtual Events

  • Monthly webinars with expert speakers
  • Case-based learning sessions
  • Journal clubs reviewing latest research
  • Q&A with AATD specialists

In-Person Gatherings

  • Annual medical conference
  • Regional symposia
  • Specialty-specific workshops
  • Networking receptions

Collaborative Research

  • Multi-site research projects
  • Patient registry participation
  • Outcome data sharing
  • Publication collaborations

Current Status:

  • 25+ physicians engaged
  • Multiple specialties represented
  • Multiple countries involved
  • Growing monthly

Join the Network: Healthcare providers interested in joining "Uniting Doctors" can contact us through our website.


Partnership Success Stories

Real Impact from Collaboration

Case Study 1: Rheumatology Partnership

A rheumatologist partner read Mark's patent and recognized the connection to his lupus patients. He began testing for AATD and discovered that 30% of his treatment-resistant patients had moderate AAT deficiency. After advocating for AAT augmentation therapy, several patients experienced dramatic improvements in symptoms and reduced medication requirements.

Impact: Changed practice patterns, improved patient outcomes, sparked research study.


Case Study 2: Pulmonology Network Effect

A pulmonologist trained by MEF shared insights with his colleagues at a major hospital system. Within 6 months, AATD testing increased 400% at their facility, leading to 15 new diagnoses and earlier treatment for patients who would have suffered for years undiagnosed.

Impact: Systemic change in institutional practice, multiplicative effect through peer education.


Case Study 3: Medical Student Innovation

A medical student exposed to Mark's research during a lecture developed a research project examining AAT levels in inflammatory bowel disease patients. His findings led to a pilot study at his institution exploring AAT therapy for treatment-resistant IBD.

Impact: Next-generation physician engaged, novel research direction initiated.


Future Partnership Opportunities

Areas Where We're Seeking Partners

Research Institutions

  • Clinical trial sites for AAT in autoimmune diseases
  • Biomarker discovery and validation
  • Alternative production development
  • Health economics and outcomes research

Healthcare Systems

  • Population health screening programs
  • Quality improvement initiatives
  • Electronic health record integration
  • Care coordination models

Diagnostic Companies

  • Point-of-care test development
  • At-home testing platforms
  • Biomarker panel development
  • Artificial intelligence for diagnosis

Technology Partners

  • Telemedicine platforms for remote consultation
  • Mobile apps for patient support
  • Data analytics and registries
  • Electronic patient education

Global Health Organizations

  • International AATD awareness
  • Resource-limited setting adaptations
  • Global screening initiatives
  • Treatment access programs

Government and Policy

  • NIH and research funding agencies
  • FDA and regulatory bodies
  • State health departments
  • International health ministries

How to Become a Partner

We Welcome Collaborators at All Levels

For Healthcare Providers:

  1. Learn: Review Mark's research and patent filing
  2. Connect: Join the "Uniting Doctors" network
  3. Implement: Start testing more patients for AATD
  4. Share: Teach colleagues and document outcomes
  5. Collaborate: Participate in research and education

For Researchers:

  1. Contact Us: Discuss your research interests
  2. Apply for Funding: Submit research proposals
  3. Access Resources: Patient registries, biobanks, data
  4. Collaborate: Multi-site studies and consortia
  5. Publish: Share findings with support

For Institutions:

  1. Education: Integrate AATD into curricula
  2. Clinical Programs: Establish specialized services
  3. Research: Participate in collaborative studies
  4. Advocacy: Support policy and guideline changes
  5. Innovation: Develop new approaches and protocols

For Industry:

  1. Production: Develop alternative AAT sources
  2. Diagnostics: Create better testing tools
  3. Therapeutics: Advance treatment options
  4. Technology: Build supportive platforms
  5. Access: Commit to affordable patient access

For Organizations:

  1. Awareness: Co-sponsor education campaigns
  2. Advocacy: Joint policy initiatives
  3. Events: Collaborative conferences and programs
  4. Research: Shared funding and resources
  5. Patient Support: Complementary services

Partnership Principles

Our Collaborative Values

Patient-Centered

  • Every partnership must ultimately benefit patients
  • Access and affordability prioritized
  • Patient voices included in decision-making
  • Ethical considerations paramount

Evidence-Based

  • Rigorous science guides all activities
  • Data transparency and integrity
  • Peer review and publication
  • Continuous quality improvement

Collaborative Not Competitive

  • Open sharing of knowledge and resources
  • Credit and recognition shared appropriately
  • Win-win partnerships
  • Collective success over individual gain

Inclusive and Diverse

  • Welcoming all specialties and perspectives
  • Geographic and demographic diversity
  • Resource-rich and resource-limited settings
  • Academic, community, and private practice

Action-Oriented

  • Focus on implementation and impact
  • Measurable outcomes and accountability
  • Rapid dissemination of findings
  • Urgency driven by patient need

The Power of Partnership

Together We Can Transform Medicine

The scope of Mark Egly's discoveries is too vast for any single organization to address alone. But together—physicians, researchers, institutions, industry, patients, and advocates—we can:

  • Diagnose millions currently suffering without answers
  • Treat conditions previously thought untreatable
  • Prevent diseases before they cause irreversible damage
  • Transform standards of care across multiple specialties
  • Save countless lives through early intervention
  • Build a future where AAT deficiency is recognized and managed from birth

Join the Movement

Individual physicians intrigued by Mark's discoveries have already begun changing practice patterns, diagnosing previously missed cases, and improving patient outcomes. As our network grows, this impact multiplies exponentially.

  • Every new partner amplifies our reach.
  • Every collaboration accelerates progress.
  • Every shared insight saves lives.

Contact Us About Partnership Opportunities

For Partnership Inquiries:

  • Healthcare providers interested in joining "Uniting Doctors"
  • Researchers seeking collaboration or funding
  • Institutions exploring educational partnerships
  • Industry partners for product development
  • Organizations for joint initiatives

We're eager to connect with anyone committed to advancing Alpha-1 Antitrypsin research, diagnosis, treatment, and awareness.


"Alone we can do so little; together we can do so much."
— Helen Keller

The Mark Egly Foundation: Building partnerships that change medicine and save lives.