First Ever CoP Meeting
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@MATES4Kids is excited to share that the first CoP meeting was a great success. An online meeting brought together 21 participants from across the globe to discuss their unique perspectives and relevant knowledge. This first meeting served as an opportunity to share information, introduce and welcome participants and stakeholders from AFR, AMR and EUR regions. An additional goal of the meeting was to introduce participants to the WHO KAP.
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@MATES4Kids was proud to have the following speakers attend and address their respective topics:
1. Kate Armstrong “CoP Meeting 1 on the Road to 2023”
Kate welcomed attendees and reiterated the mission of @MATES4Kids, the group’s three main objectives, alignment with the Knowledge to Action Framework, and an ultimate commitment to centring the CAH community. She provided several updates, shared upcoming events, and introduced the Secretariat team.
Kate welcomed attendees and reiterated the mission of @MATES4Kids, the group’s three main objectives, alignment with the Knowledge to Action Framework, and an ultimate commitment to centring the CAH community. She provided several updates, shared upcoming events, and introduced the Secretariat team.
2. Sam Sieber from WHO Global Coordinating Mechanism on NCDs – Knowledge Action Portal Introduction
Sam provided a helpful overview of the KAP, demonstrating how members of the CoP can register and access our page. He took everyone on a tour of the platform and explained all relevant functions of the KAP.
Sam provided a helpful overview of the KAP, demonstrating how members of the CoP can register and access our page. He took everyone on a tour of the platform and explained all relevant functions of the KAP.
3. Tania Sanchez Bachega - “Newborn Screening in Brazil: Past, Present, and Future Perspectivas”
Tania discussed the state of NBS in Brazil, sharing research regarding the economic benefits and cost-effectiveness of avoiding late diagnosis through NBS. Despite the nation’s public NBS practices since 2000, she talked about the inequality in the regional distribution of NBS and healthcare resources, particularly regarding rare disorders.
Tania discussed the state of NBS in Brazil, sharing research regarding the economic benefits and cost-effectiveness of avoiding late diagnosis through NBS. Despite the nation’s public NBS practices since 2000, she talked about the inequality in the regional distribution of NBS and healthcare resources, particularly regarding rare disorders.
4. Johanna Meschede and Manuela Broesamle - CAH International
Johanna and Manuela talked about the backstory and important work of CAH International. They shared about the current efforts to create workgroups with volunteers from a multitude of countries and to conduct patient surveys to better understand CAH patient and caregiver lifestyles. They aim to continue working to make research and other resources available online to the public.
Johanna and Manuela talked about the backstory and important work of CAH International. They shared about the current efforts to create workgroups with volunteers from a multitude of countries and to conduct patient surveys to better understand CAH patient and caregiver lifestyles. They aim to continue working to make research and other resources available online to the public.
5. Paola Duran - “GPED Survey Update for Latin America” and “Colombia Preliminary Profile”
Paola shared updates for both Latin America broadly as well as her home country of Colombia. She discussed the recent distribution of a GPED survey on access to medicines to Mexico, Argentine, Bolivia and Colombia. She also discussed success in getting HC to Bolivia thanks to a large multistakeholder effort. She and her team are also making progress in improving conditions for children with CAH through actions such as gathering survey data for a national registry, strengthening CAH communities, and scaling universal access to NBS.
Paola shared updates for both Latin America broadly as well as her home country of Colombia. She discussed the recent distribution of a GPED survey on access to medicines to Mexico, Argentine, Bolivia and Colombia. She also discussed success in getting HC to Bolivia thanks to a large multistakeholder effort. She and her team are also making progress in improving conditions for children with CAH through actions such as gathering survey data for a national registry, strengthening CAH communities, and scaling universal access to NBS.
6. Prisca Mureriwa and Trudy Nyakambangwe - “CAH in Zimbabwe”
Prisca and Trudy shared that in their home country of Zimbabwe HC and FC are not readily available in public health facilities although they have received donations and currently work to make sure patients are receiving the drugs consistently. They discussed the strength of their CAH patient support groups and immense progress in running the DSD/CAH dedicated clinic which is retaining patients and seeing regular follow-ups.
Prisca and Trudy shared that in their home country of Zimbabwe HC and FC are not readily available in public health facilities although they have received donations and currently work to make sure patients are receiving the drugs consistently. They discussed the strength of their CAH patient support groups and immense progress in running the DSD/CAH dedicated clinic which is retaining patients and seeing regular follow-ups.
7. Salwa AbdulBagi - Status of Sudan
We were inspired to hear from Salwa who is navigating the challenges faced by CAH patients which have recently been amplified due to Sudan’s civil war. Dialling in from Egypt, she stated that CAH is very difficult to diagnose, particularly outside of Khartoum, and that HC and FC are not readily available. Prior to the war, they had been preparing to have their first parent meeting and she is currently hoping to arrange shipments of HC and FC to Sudan.
We were inspired to hear from Salwa who is navigating the challenges faced by CAH patients which have recently been amplified due to Sudan’s civil war. Dialling in from Egypt, she stated that CAH is very difficult to diagnose, particularly outside of Khartoum, and that HC and FC are not readily available. Prior to the war, they had been preparing to have their first parent meeting and she is currently hoping to arrange shipments of HC and FC to Sudan.
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8.Manuela Broesamle - CAH across Europe
Manuela discussed that the treatment of CAH patients varies widely across Europe, a challenge combatted by the introduction of a European reference network for endocrinology. She shared information about current efforts to improve the education of physicians, increase access to medicines and the number of specialists with appropriate expertise throughout Europe, ensure important medical devices remain on the market, and introduce legal regulations to protect children who undergo sex operations. |
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