Why must you read our newsletter this month, you ask? Not only will you read about the first Latin American individual to be awarded a Nobel prize for research in Neurodegenerative Diseases, but also you will be directed to materials developed directly by this individual, in collaboration with AHF and other key opinion leaders. In addition, you will be directed to two very recent high-impact publications on topics of extreme importance: Digital Pathology in Latin America and Chronic Kidney Disease care in Brazil. You will also learn more about AHF’s participation in events of international relevance and our upcoming projects.
SPECIAL ACHIEVEMENTS WITHIN OUR NETWORK OF EXPERTS
This month, a Nobel prize has been awarded to one of our very own key opinion leaders, the first Latin American individual to receive this particular prize: Dr. Francisco Lopera. He was awarded the Potamkin Prize for Research in Neurodegenerative Diseases. The prestigious award was presented by the American Academy of Neurology and the American Brain Foundation, highlighting Dr. Lopera’s groundbreaking contributions to the field. Through his ongoing work of 40 years with Colombian families of people living with Alzheimer’s Disease in the region, Dr. Lopera’s research has had a global impact, providing valuable insights into the disease worldwide.
Dr. Lopera has recently contributed as lead author to an AHF initiative on the very subject of Alzheimer’s Disease. Our manuscript, entitled A Task Force for the Diagnosis and Treatment of People with Alzheimer’s Disease in Latin America, authored by 14 key opinion leaders* in the field, has been published in Frontiers in Neurology. The article, which offers recommendations to address existing barriers in Alzheimer’s Disease care in Latin America, has reached the impressive mark of 3.7K views and 1.2K downloads in less than a year. To learn more about these barriers and potential strategies to overcome them, make sure to read the full article.
In an effort to disseminate the information synthesized in our Task Force on Alzheimer’s Disease, we worked with our key opinion leaders to develop educational videos on the topic from different perspectives – a general landscape of the disease, a focus on the neurological aspects of the disease, a focus on the geriatric aspects of the disease, and a focus on the primary-care level aspects of the disease. Dr. Lopera participated in this effort as well, and his video can be seen here. The videos featuring the other perspectives with experts Nilton Custodio, Ricardo F Allegri, and Alberto Mimenza can be found here (make sure to scroll down). Of note, this initiative was supported by an unrestricted grant from Adium.
*Authors: Francisco Lopera, Nilton Custodio, Mariana Rico-Restrepo, Ricardo F. Allegri, José Domingo Barrientos, Estuardo Garcia Batreas, Ismael L. Calandri, Cristian Calero Moscoso, Paulo Caramelli, Juan Carlos Duran Quiroz, Angela Marie Jansen, Aleberto José Mimenza Alvarado, Ricardo Nitrini, Jose F. Parodi, Claudia Ramos, Andrea Slachevsky, and Sonia Maria Dozzi Brucki.
AHF NEWS
Announcements
In April, AHF officially announced the upcoming launch of Vaccines Beat: a global vaccines newsletter with an in-depth 360 perspective. This curated media will integrate expert commentaries with the most timely, relevant, and accessible information regarding all vaccine-preventable diseases, current and new vaccines, and other topics surrounding the global landscape of vaccinology.
Vaccines Beat aims to inform and educate, help build bridges through international collaboration of experts to improve awareness, policy, access, and R&D in vaccination. Moreover, it will provide a platform for stakeholder collaboration and engagement, fostering continued support for global projects.
Publications
Chronic Kidney Disease in Brazil: Current Status and Recommended Improvements was recently published in Karger. Authors conclude: “It is essential to have a big picture of the reality of CKD in Brazil to better outline prevention and early treatment strategies seeking to modify the progressive and harmful course of CKD. Several actions should be taken to promote better kidney health in Brazil. They can be described as people-centered, physician-centered, and healthcare institution-centered actions.” To read the full article authored by Brazilian experts in nephrology Andrea C. Bauer, Rosilene Elias, Hugo Abensur, Miguel Riella, Marcelo Costa Batista, and our medical writer, Angela Jansen, click here. Of note, this initiative was sponsored by an unrestricted grant from AstraZeneca.
Crossing the Andes: Challenges and Opportunities for Digital Pathology in Latin America was recently published in the Journal of Pathology Informatics. Authors delved into digital pathology applications, recommendations and good practices, and the specific challenges to its implementation in Latin America. The experts concluded that “In Latin America, DP has the potential to reshape health care by enhancing diagnostic capabilities through AI assistance and standardizing pathology reports. Yet, regulatory hurdles, training, resource availability, and unique challenges must be tackled. Collectively addressing these can enable the region to harness DP’s advantages, enhancing disease diagnosis, medical research, and healthcare accessibility for its population.” To read the full article, authored by Renata A. Coudry, Emilio A.C.P. Assis, Fernando Pereira Frassetto, Angela Marie Jansen, Leonard Medeiros Da Silva, Rafael Parra-Medina, and Mauro Saieg, click here.
Events
World Orphan Drug Congress (WODC), USA
Dick Salvatierra, President at AHF, and Felicitas Colombo, Director of Government and Public Affairs at AHF, represented AHF at the WODC 2024. In the policy panel, 360 view: How do we improve access while we continue to promote innovation, Felicitas was the moderator, and Dick was a panelist, alongside Durhane Wong-Rieger, President & CEO of the Canadian Organization for Rare Diseases & Rare Diseases Intarnational, and Alexander Natz, Diretor General of EUCOPE – European Confederation of Pharmaceutical Entrepreneurs. During this global-impact event, AHF presented a poster which addresses the burden of rare diseases on caregivers: RARECARE: A Policy Perspective on the Burden of Rare Diseases on Caregivers in Latin America. The poster synthesizes insights from a published article of the same name, developed by AHF in collaboration with several key opinion leaders. You can access the full article here, it was published in Frontiers in Public Health.
Women in Rare: Science and Research (RARE REV-inar)
On International Women’s Day 2024, Dr. Mariana Rico, Vice President, Regional Medical Director at AHF, participated as a panelist in a webinar hosted by the RARE Revolution Magazine in collaboration with Alexion, AstraZeneca. The aim of the webinar was to celebrate women in rare disease science and research, delving into the power of collaboration in research and the driving-force role women have in rare diseases. In her participation, Mariana described how “the impact of caregiving on women is disproportionate. The whole economy of care is an important issue that needs to be addressed through policies that protect women.” She joined the panel alongside Wendy Erler (Alexion, AstraZeneca), Yael Weiss (Mahzi Therapeutics), and Professor Lara Bloom, CNE (Ehlers Danlos Society). The article resulting from the event was recently published, and it can be accessed here.
As we close the month of April, we reflect on our efforts with pride. Once again, AHF has reaffirmed its commitment to promoting access to quality healthcare through policy-driven initiatives. Continue scrolling to see some pictures from AHF this month and stay tuned for more.
AHF at WODC 2024: Joff Masukawa, Board Member at AHF, Felicitas Colombo, Director of Government and Public Affairs at AHF, and Dick Salvatierra, President at AHF.
