We have collaborated with Pfizer to develop a toolkit of relevant, community-based initiatives and best practice summary documents that aims to drive collaboration across the global ABC/MBC community. The initiatives included in this repository have been submitted from across the globe and address at least one of the 12 hard-to-reach populations outlined below: Find more about each one: https://shorturl.at/CiwWM Pfizer
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Time to reflect… On my takeaways from the World Orphan Drug Congress (WODC) in Boston last week This was my first time attending this meeting so I was not sure what to expect, It was inspiring I met parents, patients and organizations working on behalf of those with a rare disorder 🎆The excitement and passion of all of those who attended was palpable throughout the week 🎆The raw emotion of those who were advocating for themselves and others was evident throughout the week Common themes: 🔥 Access to treatment is critical 🔥 Inclusion of the patient voice in the development of new treatments is needed from the beginning 🔥 Robust natural history data in the rare disease space is needed 🔥 Multiple organizations are developing registries 🔥 Innovation and creativity in the approach to clinical trials 🔥 If we come together (patients, advocacy organizations, biotech/pharma companies, regulators) great things can be accomplished This congress reinforced why I am passionate about working with the rare disease community to identify opportunities to bring new treatments to the market, learn more about what drives them and about how best to support those living with a rare disorder. If you attended WODC, what were your takeaways from the week? Comment below #raredisease #WODC #networking
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Pediatric vaccine trials in low- and middle-income countries (LMICs) face challenges like safety monitoring, cultural engagement, and limited resources. Effective community engagement is essential for overcoming cultural norms and language barriers. Furthermore, ethical considerations and regulatory variability complicate trial implementation, underscoring the need for sustainable research capacity to ensure that successful vaccines reach the communities involved in their development. Read our whitepaper for more: https://lnkd.in/e8Nwv46u
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What an incredible conversation about 'RWE for Informed and Impactful Decision Making'! At the International Congress on Rare Diseases and Orphan Drugs, we explored how real-world data (RWD) can transform healthcare, especially for rare diseases. A huge thank you to our expert panelists: Patrice Verpillat (EMA), who highlighted the groundbreaking DARWIN EU initiative, demonstrating the power of collaboration to harness RWD's potential. Niklas Hedberg (TLV), emphasizing that RWD has the potential to democratize drug development by making data access less exclusive. @Stanislav Kniazkov (WHO Europe), underscoring that building trust – through technical standards, effective regulation, transparency and collaboration – is crucial for RWD to be used confidently in global policymaking. Sergio Diaz (IQVIA), championing patient-led data collection and advocating for patient organizations to play a leading role in shaping RWD initiatives. We heard perspectives from regulators, HTA bodies, global health leaders, and patient advocates. While RWD complements traditional clinical data, we need rigorous technological frameworks, quality standards, and agreement on their implementation to ensure it fulfills its promise. My key takeaway: The future of healthcare decisions lies in the responsible, collaborative, and technically robust use of RWD. Thank you to the organizers and my dear friend Dimitrios Athanasiou MBA for having me as a moderator and for a thought-provoking discussion! RARE DISEASES GREECE European Medicines Agency WHO Regional Office for Europe IQVIA #RWE #RareDiseases #DARWINEU #HealthcareInnovation
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The Drugs for Neglected Diseases initiative - DNDi 2023 Annual Report is out! This year's report highlights remarkable progress in developing new treatments for neglected diseases, innovative partnerships, and impactful global health initiatives. DNDi continues to drive forward with its mission to ensure access to essential medicines for neglected patients. We would like to extend our sincere thanks to our partners and staff who have supported our work in the last 20 years as we continue to develop urgently needed treatments and ensure they’re affordable, available, and adapted to the communities who need them. Read more about how DNDi is making a difference in global health through groundbreaking research, collaboration, and advocacy. #InnovatingTogether https://bit.ly/3W2vvM2
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I recently came across a compelling article in The Guardian by Tharanika Ahillan, which resonated deeply with our mission at Innovarx Global Health. The piece brilliantly highlights the often-overlooked issue of substandard medications in Africa and their devastating impact. As someone who has witnessed firsthand the tragic consequences of this problem in The Gambia, where children lost their lives to subpar medications in 2022, I can attest to the urgency of addressing this crisis. A crucial aspect often overlooked in reports on this issue is the pivotal role of regional regulatory bodies. Historically, medications in these regions have been regulated primarily as commodities, with a focus on market access rather than safety. This misalignment of priorities creates a dangerous vulnerability. As long as regulatory efforts prioritize market dynamics over public health, unscrupulous actors will continue to exploit these gaps. They will find ways to infiltrate markets, compromise safety standards, and proliferate substandard products. I commend Tharanika for bringing this critical issue to light. It's through such impactful journalism that we can hope to drive change and save lives.
Fifth of medicines in Africa may be sub-par or fake, research finds
theguardian.com
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Very interesting the article to learn more about the clinical trial landscape in Africa and what Sanofi is doing to break down barriers and create a more diverse and equitable future. https://lnkd.in/ePMUC3yF
Africa carries 25% of the global disease burden, yet less than 2% of the world’s #clinicaltrials are conducted there. My latest op-ed for Devex examines why this paucity exists and how we can turn Africa into a clinical trials powerhouse. When I visited Africa late last year, I met with site investigators. I saw firsthand what they’re up against, including limited infrastructure and funding constraints, and the initiatives the sites developed to address these challenges. Sanofi is working to mitigate these shortfalls, but we need a more significant shift in industry priorities if we’re ever going to achieve more inclusive trials that represent the diversity of the patient populations living with the disease. Read the article to learn more about the clinical trial landscape in Africa and what we’re doing to break down barriers and create a more diverse and equitable future. https://lnkd.in/ePMUC3yF Rakhi Agarwal Hermann Trepesch Raj Verma Kasey (Bates) Boynton Lionel Bascles Victoria DiBiaso Kelly Simcox #diversityandinclusion #globalhealth
Opinion: Boosting Africa clinical trials is crucial for health equity
devex.com
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Mapping our work in expanding access to quality medications in Africa.
Here is my latest blog post from my Harvard Chan Africa Health Students Forum. This is post 3 from our collaboration. This post maps key changemakers in local manufacturing in Africa and the opportunities and challenges. This session has speakers from CEPI (Coalition for Epidemic Preparedness Innovations), Aspen Pharma South Africa, Axmed, Harvard Law School, RxAll . 💊 💉 The speakers were: Christopher da Costa, MD, PhD, MBA, FACP, FIDSA, Stavros Nicolaou, Prof. Ruth L. Okediji, Sofía Radley-Searle, Adebayo (Sam). The session was moderated by Anja Riester. Thank you to the conference Co-Chairs Teguo Daniel Djoyum (He/His) MPH, CNIM, REEG.T, FASET, Anja Riester, Sabrina Ebengho, Valencia Lambert, Tatenda Mujeni for making space for my bog, and for organizing such a great space. To read: https://lnkd.in/ea877_Y6 Photo: In-Person speakers from left to right: Prof. Ruth, Dr. Christopher, Sofia, Adebayo, and Anja the moderator of the panel. #JontaKam #HealthSystems #LocalManufacturing #Vaccines #Pharmaceuticals #Agenda2063
Mapping Changemakers in Local Manufacturing in Africa
jontakam.com
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SURVEY FOR PARENTS OF CHILDREN WITH OI The OI-researcher Begoña Nafría Escalera from Spain is part of a working group at the European Medicines Agency (EMA) working for the inclusion of children in cross-border clinical trials, ensuring that they are not discriminated against based on their native language or country of residence. If you are a parent of a child with OI, please take 10 minutes to complete this survey (accessible in 22 European official languages): https://lnkd.in/dg5aeM3E Please also help her by sharing this post or tagging people you think could contribute to this survey. The survey is BOTH for people who have taken part in clinical trials, and those who do NOT have this experience. #osteogenesisimperfecta #rarediseases #crossborderclinicaltrials
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📢 Two weeks remaining to submit your abstract for the 7th #GlobalForumTBVaccines! Researchers, product developers, advocates, community representatives, and others engaged in new TB vaccines are encouraged to submit abstracts on new approaches, data, and results across five thematic tracks: 🚇 Diversifying the pipeline ⏩ Accelerating clinical trials ⚕️ Ensuring public health impact 🚚 Preparing for implementation 🤝 Enabling factors for R&D 📅 Submissions close 17 May 2024 🔗 Learn more at https://lnkd.in/efTp-MX2
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News from the other side of the globe! 🇦🇺 #LaunchR is a new network of Western Australian, national, and international rare disease experts dedicated to developing, providing access to, and manufacturing of, precision medicines for rare disease. #LaunchR also stimulates the pathways to translate these to impact for common diseases. The network leverages WA's expertise in rare disease precision medicine, particularly, but not only, in antisense oligonucleotides to pioneer personalised therapies for rare diseases. #LaunchR brings together initiatives for integrated pipelines for diagnosis, drug discovery, trials and treatment access; and new local (drug) manufacturing industry. As part of LaunchR’s initiatives, through the #RareCareCentre and a network of public-private partnerships, an expanding paediatric rare diseases clinical trials and treatment ecosystem, called TrialR, to administer these cutting-edge medicines, is in deployment. Additionally, LaunchR will prioritise equity by advancing access to treatments and clinical trials for underrepresented populations, including First Nations Australians, for example through Lyfe Languages (the Universal Indigenous Medical Translator); and for those living in remote regions, through teletrials partnerships. #LaunchR is fuelled by the Rare Diseases Moonshot-Australia (RDMA). With linkages to local, national and international teams, #LaunchR represents a crucial step forward in addressing the unmet needs of people living with rare diseases and their families, a staggering of 95% of rare diseases lack a specific and prognosis altering therapy. Gareth Baynam International Rare Diseases Research Consortium (IRDiRC)
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