2do Congreso de Enfermedades Raras

Days
Hours
Minutes
Seconds

Organized by

ahf
instituto genetica humana
Days
Hours
Minutes
Seconds

Organized by

instituto genetica humana

Agenda of the event

The second edition of the Rare Disease Congress for Latin America and the Caribbean promises to be a dynamic and enriching space, where collaboration and commitment will be key to advancing the improvement of care and treatment of rare diseases in the region.

*Agenda subject to change

Day 01

Day 02

Thursday, October 16th

Time

Panel

Panelists

8:00 a.m.
8:30 a.m.

Registration

8:30 a.m.
9:00 a.m.

Opening and Welcome

AHF, ERCAL, PUJ

9:00 a.m.
9:15 a.m.

2023 Congress Recap

Video

9:15 a.m.
9:45 a.m.

  • Regional Landscape 2023-2024
  • Update of RD landscape since 2023 Congress

9:45 a.m.
10:30 a.m.

  • Shaping Future Policies for RD in Latin America
  • Current legislative status and future vision in the region

10:30 a.m.
11:45 a.m.

Patient Registries: Unlocking Opportunities and Overcoming Challenges

  • Data homogeneity
  • Variability of the official inventory of diagnoses

11:45 a.m.
12:30 p.m.

Proactive Approaches to Prevention and Early Diagnosis

  • Genetic Counseling
  • Neonatal Screening
  • Access to genetic diagnosis

12:30 - 2:00 p.m.

Lunch

2:00 p.m.
2:45 p.m.

HTA Methodologies for RD

  • Challenges facing new high-cost therapies
  • Differentiated HTA methodologies
  • Social participation in HTA

2:45 p.m.
3:30 p.m.

The Health Economics of RDs: Pathways to Integration

  • Socioeconomic impact of RDs (burden on health systems, loss of economic productivity, potential social benefits of effective interventions).
  • Interaction between health economics and RD management.
  • Public-private partnerships and innovative financing schemes that balance cost with access.

3:30 p.m.
4:15 p.m.

Innovative Financing Strategies for RD

  • Regulatory frameworks vs. finite budgets
  • Innovative financing alternatives
  • Rational use and control of resources

4:15 p.m.
5:00 p.m.

Voices of Rare Diseases: Patient Testimonials

  • Personal testimonials from patients with rare diseases, highlighting their unique challenges and experiences to raise awareness and advocate for better care and support.

5:00 p.m.
6:00 p.m.

The experience of patient organizations in Latin America and the Caribbean

  • Representatives from Patient Advocacy Groups from ERCAL, will share their experiences, challenges, and successes in supporting individuals with rare diseases across Latin America and the Caribbean.

Friday, October 17th

Time

Panel

Panelists

9:00 a.m.
9:30 a.m.

Presentation of ERCAL Standards in Public Policy

  • Approach to a solution-based proposal

9:30 a.m.
10:15 a.m.

Global Legislative Practices for Advancing RD Policy (international organizations)

  • Areas of opportunity, best practices, support and collaboration

10:15 a.m.
11:00 a.m.

Casa dos Raros 2023-2024

  •  An unprecedented initiative in Latin America, Casa dos Raros emerged to be an interconnected network of comprehensive care for people with rare diseases.

11:00 a.m.
11:30 a.m.

Comprehensive RD Care and the Role of Reference Centers

  • Critical role of reference centers in providing specialized, coordinated, and comprehensive care for patients with rare diseases.

11:30 a.m.
11:45 a.m.

Life is Rare (Vivir es Raro/ Vivir e Raro)

11:45 a.m.
12:30 a.m.

Fostering Research Initiatives in RD Across Latin America

  • Presentation of a case study (TBD)

11:45 a.m.
12:30 p.m.

Fostering Research Initiatives in RD Across Latin America

  • Presentation of a case study (TBD)

12:30 p.m.
1:15 p.m.

Best practices of regulatory agencies in the region

  • Presentación de distintos modelos de trabajo a nivel nacional

1:15 p.m.
1:50 p.m.

Bridging the Gap: Ensuring Access to Innovation

  • Strategies to ensure access in the context of changing Latin American healthcare systems

1:50 p.m. - 2:00 p.m.

Closing and Acknowledgements

2:00 p.m. - 3:00 p.m.

Lunch

3:00 p.m.
4:00 p.m.

Technical Working Groups - Regulation and Access Subcommittee

  • Initial review of ERCAL Standards in public policy and establishment of the work agenda
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