21.02.2025, 12:57

few grammatical errors and amendments. Inserted congenital anomalies. Changed PLWD to Persons living with congenital anomalies and rare diseases.


New petition description:

We urge the Government of Ghana through the Ministry of Health to take the lead in developing and implementing a national plan for congenital anomalies and rare diseases in collaboration with stakeholders such as patient advocacy groups and healthcare professionals. This is to ensure that every Ghanaian living with a congenital anomaly and rare diseases have access to the care and support they need to live healthy, fulfilling lives.

We propose the following actions for inclusion in the National Plan for Congenital Anomalies and Rare Diseases: 1.   EstablishDiseases: 1. Establish a National Multisectoral Congenital Anomaly & Rare Disease Technical Working Group to coordinate efforts across health, education, and social sectors.2.   Integratedsectors.2.  Integrated Healthcare Strategy to guarantee long-term viability and cost-effectiveness of care, integrate congenital anomalies and rare illnessdisease management into national healthcare regulations.3.   Createregulations.3.  Create Centers of Expertise for Congenital Anomalies and Rare Diseases to provide multidisciplinary, patient-centered care.4.   Enhancecare.4.  Enhance diagnostic capabilities through newborn screening and genetic testing services.5.   Developservices.5.  Develop a National Rare Disease Registry as a centralized database to facilitate data collection, research, and informed decision-making by introducing congenital anomalies and rare disease coding into health datasets.6.   Traindatasets.6.  Train healthcare professionals in congenital anomalies and rare disease diagnosis and management.7.   Provide incentives for orphan drug development and registration through the FDA.8.   Review existing laws and policies to better address the needs of PLWRD.9.   Expandpersons living with congenital anomalies and rare diseases.9.   Expand social support programs to include PLWRDpersons living with congenital anomalies and rare diseases and their families.10.Support research and innovation in rare diseases through targeted funding.11.Empower patient groups to participate in decision-making processes.12.Ensure sustainable financing through the NHIS and a dedicated Rare Disease Fund.

Rare diseases, though individually uncommon, collectively affect over 300 million people worldwide, including an estimated 2 million Ghanaians. These diseases are often chronic, life-threatening, and disproportionately affect children, accounting for 35% of infant deaths and 30% of deaths in children under five. Despite their significant impact, rare diseases remain a neglected area in healthcare, with 95% of rare diseases lacking approved treatments and many patients facing delayed diagnoses, high costs of care, and limited access to specialized services.

The absence of a structured national framework exacerbates these challenges, depriving many people of the care and support they require. This call aligns with global efforts to address the challenges faced by Persons Living with Rare Diseases (PLWRD) and their families, as reflected in the 2021 United Nations Resolution on Rare Diseases (A/RES/76/132) and the ongoing advocacy for a World Health Assembly (WHA) Resolution on Rare Diseases. A National Plan would ensure that Ghana meets its commitments under the United Nations Sustainable Development Goals (SDGs), particularly SDG 3.8 on Universal Health Coverage (UHC), which calls for equitable access to quality healthcare for all, including those with rare diseases.

Why a National Plan for Rare Diseases?1.   AlignmentDiseases?1. Alignment with Global Commitments: The 2021 UN Resolution on Rare Diseases and the inclusion of rare diseases in the 2019 and 2023 UN Declarations on UHC underscore the need for national action. A WHA resolution on rare diseases would further strengthen global efforts, and Ghana can lead by example by developing a national plan.2.   Improved Diagnosis and Treatment: A national plan would establish Centers of Expertise for Rare Diseases, enhance newborn screening programs, and support the training of healthcare professionals in rare disease diagnosis and management.3.   Equitable Access to Care: By integrating rare diseases into the National Health Insurance Scheme (NHIS) and establishing a dedicated Rare Disease Fund, Ghana can ensure that PLWRD have access to affordable, life-saving treatments.4.   Data and Research: A national plan would prioritize the collection of data on rare diseases and support research and innovation, enabling evidence-based policymaking and improving outcomes for PLWRD.5.   Social and Economic Impact: Rare diseases place a significant burden on families, caregivers, and the healthcare system. A national plan would provide social support programs and poverty alleviation interventions to mitigate these challenges.