Enfermedades Raras: Presente y Futuro
2022-09-26 10:30 - 13:00 UTC

International Human Gene Therapy Conference
2022-09-26 | Melbourne Convention and Exhibition Centre, Melbourne, Australia
The aim of the International Human Gene Therapy Conference is to bring together all the key stakeholders interested in genetics and gene therapy to share and discuss advances and developments in these fields. Therefore we aimed at assisting academicians, business executives, researchers, scientists, manufacturers, gene therapy companies, communities, and agencies to keep on new developments in their specific fields and to join forces in finding alternative solutions.
Gene Therapy Conference is a unique way to approach and encourage a dialogue between speakers and delegates through its well-planned agenda with a series of talks, poster presentations, panel discussions and networking events that will keep participants engaged in learning. This will help rising scientific queries and provide solutions for a smarter and more advanced future.

Investing in Health Systems strengthening for Universal Health Coverage through a primary health care oriented approach
2022-09-21 17:00 - 19:00 UTC
The 3rd annual ministerial meeting on Universal Health Coverage: Investing in #health systems strengthening for UHC through a primary healthcare oriented approach.
ONLINE

1st WORLD PATIENTS CONFERENCE
2022-09-15 - 2022-09-16
The 1st WORLD PATIENTS CONFERENCE, organised by The World Patients Alliance, will provide patients the platform and opportunity to network, exchange information, share experiences, learn from each other, raise your voice, and advocate for patients cause internationally.

2022 International Scientific Symposium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorder
2022-09-14 00:00 - 2022-09-17 00:00 UTC
Taking place in Rome, Italy, and with a virtual attendance option for those around the world, The International Scientific Symposium on the Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) is a state-of-the-art meeting in which new research on clinical advances and the molecular and pathogenic mechanisms underlying EDS and related syndromes will be discussed.

Small Group Discussion - Advocating for a National Plan
2022-09-07 12:00 - 13:00 (Europe/Paris)
Rare Voices Australia (RVA) will host a small group discussion on lessons learned and successes on the road to advocating for Australia’s national plan.
The meeting is particularly designed for patient advocates. Please be ready to ask questions and be part of a conversation on this important topic.

ONLINE

Rare Neuroimmune Disorders Symposium
2022-08-07 - 2022-08-09 | Hilton Los Angeles Airport, 5711 West Century Boulevard Los Angeles, Los Angeles, CA 90045, United States
The RNDS was created to bring together individuals diagnosed with rare neuroimmune disorders and clinicians and researchers that focus on these disorders. This event is the only one of its kind. This event focuses on those with acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM), as well as their families, care partners, and medical professionals.
Hybrid – Online and Los Angeles, CA, USA

The Cambridge Rare Disease Showcase
2022-07-06 18:30 - 21:00 (Europe/Paris) | Clayton Hotel, Cambridge, 27-29 Station Rd, Cambridge, CB1 2FB, United Kingdom
The Cambridge Rare Disease Showcase, a relaxed and informal networking evening in one of the UK’s most prominent scientific hubs, is back for the first time in two years!

European Conferences on Rare Diseases and Orphan Drugs (Online)
2022-06-27 - 2022-07-01

HTAi Annual Meeting 2022 (Hybrid Event)
2022-06-25 - 2022-06-29
The 2022 Annual Meeting will offer a hybrid event with on-site and virtual access! Discussions will focus on Lifecycle Approach: Coming Together to Make it Happen.

RDI Membership Meeting (Online)
2022-06-16 14:00 - 17:00 UTC

RDI General Assembly
2022-06-15 14:00 - 16:00 UTC

Rare Drug Strategy Conference
2022-06-08 - 2022-06-09
This two-day conference brings together the stakeholders and the learnings from all CORD and others’ consultations.

Colloque Scientifique Annuel 2022, Fondation Maladies Rares
2022-05-31 09:00 - 18:00 (Europe/Paris) | College de France, 11 Place Marcelin Berthelot, Paris, 75231, France
Each year, Plateforme Maladies Rares are organising a conference bringing together the major players in rare disease research.

RDI Informal Side-Event 75th World Health Assembly
2022-05-24 18:30 - 20:30 UTC
Networking experts, centers of expertise and patient organizations to Strengthen Health Systems for Rare Diseases

Walk the Talk: Health For All Challenge, WHO
2022-05-22
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 will start at Place des Nations from 8.30am.
People around the world are invited to take part in the event by tracking their performances through a dedicated app. By registering, participants will receive a login to take part-in anywhere in the world. More information is coming soon.

How Patient Involvement is Making a Difference in HTA: PCIG Webinar
2022-05-19 19:00 - 20:30 (Europe/Paris)
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 impact from different stakeholders’ perspectives and review the preliminary findings from this research, highlighting the various domains and types of impact identified. The webinar will also provide an opportunity to discuss good practice and encourage reflection on patient involvement processes.

Online workshop: Understanding access and reimbursement
2022-05-17 - 2022-05-19
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.

Stakeholders Workshop : A call for action on Rare Diseases (closed meeting)
2022-05-17
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

Congreso Internacional Duchenne Parent Project España
2022-05-13 - 2022-05-15 | Novotel Madrid Center, Madrid, Spain
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)
2022-05-13
Join The Hill for a discussion on improving the diagnostic journey for the 30 million Americans living with rare disease.

UIA Associations Round Table Brussels 2022
2022-05-09 00:00 UTC | Marriott Grand Place, Brussels, Belgium
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.

WFH 2022 WORLD CONGRESS
2022-05-08 - 2022-05-11
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 platform.

Fabry Expert Meeting 2022 (Online)
2022-05-07 09:00 - 18:00 (Europe/Helsinki)
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.

IFSBH MEMBERS TRAINING : From local to global – How to influence international actions through national advocacy (Online)
2022-05-06 12:00 - 13:00 (Europe/Helsinki)
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 speak further on how to use a UN Resolution on a National Advocacy level.

Participation is limited to two participants from each IF member association

4th Symposium on Birth Defects and Rare Diseases (Hybrid)
2022-05-06 09:00 - 16:00 UTC | Kumasi, Ghana
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.

IPIC 5th Edition
2022-04-27 - 2022-04-29 | Algarve Congress Center, Vilamoura, Portugal
Meet up with world-renowned experts, and many other colleagues and stakeholders, with an interest in primary immunodeficiencies/Inborn Errors of Immunity.

Diaphragmatic Congenital Hernia International Symposium 2022 (Hybrid)
2022-04-27 - 2022-04-29

Cure CMD Young Adult Educational Transitions Webinar
2022-04-23 00:00 (America/New_York)

Journée mondiale de l'hémophilie
2022-04-17
