Advocacy Priorities of Our International Network of Persons Affected by Neglected Tropical Diseases (NTDs)
As a global network of individuals who have experienced a neglected tropical disease (NTD)—alongside our families, friends, and support systems—we call for meaningful inclusion, equity, and dignity through the following priorities:
1. Ensure Full Inclusion and End Discrimination

• Commit to the inclusion of persons affected by NTDs in all areas of society to uphold human rights, promote empowerment, and eliminate stigma and discrimination.
  

2. Build Capacity for Stronger Advocacy

• Provide sustained capacity-building support to organizations led by affected persons to strengthen their advocacy skills and leadership.
  

3. Strengthen Involvement in Prevention and Control

• Recognize and reinforce the critical role of affected individuals in NTD prevention and control by supporting participation as employees, volunteers, and members of self-care groups. This includes:
  
  • Serving on technical and awareness committees
    
  • Assisting health workers in patient tracing
    
  • Detecting symptoms in culturally appropriate ways, especially in remote areas
    
  • Supporting newly diagnosed persons and their families throughout treatment and rehabilitation
    
  • Encouraging treatment adherence and supporting health workers
    
  • Administering medication in underserved areas
    
  • Preventing disability through education and peer support
    

4. Improve Diagnosis, Treatment, and Rehabilitation

• Address systemic barriers to care by:
  
  • Ending the use of misleading “elimination” language that leads to reduced funding and services
    
  • Ensuring access to the highest quality of care, including medications, medical facilities, diagnostics (e.g., skin smears, biopsies, PCR technology), and health innovations
    
  • Guaranteeing informed consent for all medical interventions, including prophylaxis and treatment
    
  • Integrating mental health support and counseling as part of a holistic treatment approach
    
  • Advocating for specialized training of primary health workers in NTD diagnosis and care
    
  • Connecting individuals to vocational training and employment opportunities after treatment
    

5. Prevent Disease-Related Disabilities

• Prioritize early detection to prevent disabilities
  
• Ensure access to assistive technologies, including custom footwear and mobility devices
  

6. Integrate NTDs in Broader Health and Social Agendas

• Include NTDs in cross-cutting dialogues related to disability, poverty, mental health, and social justice to foster broader awareness and coordinated responses.
  

7. Promote Education, Self-Reliance, and Social Inclusion

• Expand educational and livelihood opportunities to foster self-reliance, dignity, and confidence
  
• Provide targeted support for children living in communities affected by Hansen’s disease
  

8. Advance Social Science Research with Affected Persons

• Deepen understanding of the lived experience through participatory social science research by:
  
  • Facilitating inclusive communication between researchers and affected individuals, free from academic jargon
    
  • Engaging persons affected as co-researchers and partners
    
  • Updating studies on stigma and discrimination based on community-based, not institutional, settings
    
  • Conducting national surveys to assess socioeconomic conditions of individuals living with NTDs
    
  • Applying research findings to design and evaluate post-treatment community reintegration programs
    

9. Elevate the Voices of Experts by Experience

• Support and fund participation of individuals affected by NTDs in international, national, and local forums to share expertise and shape policy.
  

10. Dismantle Legal and Structural Discrimination

• Continue to identify and repeal discriminatory laws and policies that deny rights or perpetuate segregation.
  

11. Close the Digital Divide

• Expand access to digital tools and connectivity to enable full participation in advocacy, education, and care coordination.
  

12. Increase Grassroots Awareness and Advocacy

• Promote dialogue and awareness in faith-based institutions, schools, and among traditional healers to challenge stigma and misinformation.
  

13. Ensure Dignity for Elders Affected by NTDs

• Provide comprehensive care and support to individuals diagnosed before a cure was available, especially those living in segregated communities, so they may live their remaining years with dignity and respect.
  

14. Honor the Courage of Affected Individuals

• Recognize and uplift the extraordinary strength and resilience of people affected by NTDs—past and present—as a source of inspiration and a catalyst for positive, lasting change.