Calendar of Events
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IPIC 5th Edition
Meet up with world-renowned experts, and many other colleagues and stakeholders, with an interest in primary immunodeficiencies/Inborn Errors of Immunity.
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4th Symposium on Birth Defects and Rare Diseases (Hybrid)
4th Symposium on Birth Defects and Rare Diseases (Hybrid)
Theme: “Patient Centricity: Key to Achieving Universal Health and Inclusion” Mary Wang (Science Policy Manager, Rare Diseases International) and Matt Bolz-Johson (Programme Director - Collaborative Global Network for Rare Diseases, Rare Diseases International) will speak about regional and global collaborative initiatives.
IFSBH MEMBERS TRAINING : From local to global – How to influence international actions through national advocacy (Online)
IFSBH MEMBERS TRAINING : From local to global – How to influence international actions through national advocacy (Online)
The next IF members training on policy and advocacy will take place on May 6 2022 at 12 PM Brussels time. A session to discuss the role of civil society in shaping the activities of international organisations and how campaigns for actions are designed and implemented. Dolores Cvitičanin - Public Affairs Manager at RDI - will […]
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Fabry Expert Meeting 2022 (Online)
Fabry Expert Meeting 2022 (Online)
Every year, Fabry International Network brings patients together where they will receive valuable, up-to-date information about Fabry disease as well as on-going clinical trial updates and new trial opportunities.
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WFH 2022 WORLD CONGRESS
The World Federation of Hemophilia (WFH) and the Canadian Hemophilia Society (CHS) will welcome the global bleeding disorders community to the WFH 2022 World Congress—a major hybrid event of the international bleeding disorders community. The in-person component of the hybrid Congress will take place in Montreal, Canada, with select sessions being broadcast through our virtual […]
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UIA Associations Round Table Brussels 2022
UIA Associations Round Table Brussels 2022
The UIA Round Tables provide an opportunity to learn through networking and through practice, to meet other international associations and share experience and knowledge to help you run your organization better.
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Congreso Internacional Duchenne Parent Project España
International congress to facilitate families and those affected to provide information and share experiences to promote support and learn about the different aspects of Duchenne and Becker Muscular Dystrophy.
Improving Rare Disease Diagnostics & Care (Online)
Join The Hill for a discussion on improving the diagnostic journey for the 30 million Americans living with rare disease.
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Stakeholders Workshop : A call for action on Rare Diseases (closed meeting)
Rare Disorders Kenya, together with Kenya Medical Research Institute (KEMRI)-CPHR and Cambridge Africa are holding a stakeholders workshop on rare diseases in Kenya. Theme: A call for action on Rare Diseases
Online workshop: Understanding access and reimbursement
This workshop will outline the basics of access and reimbursement: what it means, when it happens, and who is involved. It will also explore the key ways in which patient groups can contribute to the process and what should they be prepared for.
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How Patient Involvement is Making a Difference in HTA: PCIG Webinar
How Patient Involvement is Making a Difference in HTA: PCIG Webinar
HTAi’s Patient and Citizen Involvement in HTA Interest Group (PCIG) will be looking at "Stakeholders' perspectives of impact in patient involvement in HTA." The project team collects and evaluates multi-stakeholder perspectives about the perceived difference patient involvement has made in specific HTAs or HTA processes. The team and invited speakers will share case examples of […]
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Walk the Talk: Health For All Challenge, WHO
The World Health Organization will organize the 3rd edition in Geneva of the “Walk the Talk: Health For All Challenge” on Sunday 22 May, on the morning of the World Health Assembly. This in-person event will invite participants to run or walk over two routes: 3 km and 4.2 km. People of all ages and abilities […]
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RDI Informal Side-Event 75th World Health Assembly
RDI Informal Side-Event 75th World Health Assembly
Networking experts, centers of expertise and patient organizations to Strengthen Health Systems for Rare Diseases
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Advocacy in Hemophilia 2022 Series (Online)
This Reuters Events Advocacy in Hemophilia 2022 Series, of three virtual events, will take place in May, July and October. Global patient advocacy leaders will come together with esteemed topic thought leaders to collectively examine how hemophilia and rare disease advocates, policy makers, payers and regulators can truly harness innovation and break current paradigms to […]
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Colloque Scientifique Annuel 2022, Fondation Maladies Rares
Colloque Scientifique Annuel 2022, Fondation Maladies Rares
Each year, Plateforme Maladies Rares are organising a conference bringing together the major players in rare disease research.
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