HCRFF Rare Diseases

The Haiti Cholera Research Funding Foundation Inc USA HCRFF is part of the World Health Assembly Resolution of Rare Disease International. As a member the foundation will promote the awareness of Rare Disease outreach the Hispanic Community through brochure and side events. The Rare Diseases disproportionately affect the Hispanic/Latino community due to factors like genetic predispositions and disparities in healthcare access. These include sickle cell disorder, thalassemias, and hereditary hemochromatosis. Additionally, there’s an underrepresentation of Hispanic patients in rare disease research and clinical trials, further exacerbating health inequities.

Here’s a more detailed look:

• Specific Rare Diseases with Higher Prevalence:
  • Sickle Cell Disorder: While not exclusively a Hispanic condition, its prevalence is higher in certain ethnic groups, including the Hispanic/Latino population.
  • Thalassemias: Similar to sickle cell disorder, certain types of thalassemias have higher prevalence in specific ethnic groups.
  • Hereditary Hemochromatosis: This rare disease, which causes the body to absorb too much iron, is more common in individuals of Northern European ancestry, but can also affect the Hispanic/Latino population.

On 24 May, RDI Global Policy Coordinator Alanna Miller delivered RDI’s first individual NSA statement. The statement gave a voice to the 275 civil society rganizations, hospitals, and academic institutions that have joined the Coalition in support of the WHA Resolution on Rare Diseases.

Read The full statement: https://www.rarediseasesinternational.org/wp-content/uploads/2025/05/WHA78-Individual-Statement_v2.pdf

Read The Seventy-eighth World Health Assembly Agenda item 13.3 https://apps.who.int/gb/ebwha/pdf_files/WHA78/A78_R11-en.pdf

Milestones and Momentum in Rare Diseases 10 Years of Progress, 10 Years of Possibility
https://www.youtube.com/watch?v=_MjafOlwWmk