Rare Diseases International

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

RDI Webinar - Essential List of Medicinal Products for Rare Diseases
2022-03-30 16:00 UTC
Open only to RDI Member Organisations

Webinar - Plain Language Summaries
2022-03-17 15:00 - 16:00 (Europe/Paris)

Global Rare Disease Day Event - World Expo Dubai/ONLINE
2022-02-28
Register

Rare Disease Day
2022-02-28

RaceFor7
2022-02-27

Rare Disease Malaysia Family Gathering & Conference 2022
2022-02-26 00:00 UTC

Global Disability Summit: 2022
2022-02-15 08:00 - 2022-02-17 17:00 UTC

EURORDIS Black Pearl Awards
2022-02-08 18:00 - 19:30 (Europe/Paris)

International Rare Disease Showcase
2022-02-01 - 2022-02-03

African Summit on Rare Diseases
2021-12-01 - 2021-12-03

World Orphan Drug Congress, Europe
2021-11-15 08:00 - 2021-11-18 17:00 UTC | Melia Sitges Hotel, Barcelona, Spain

EPF Congress 2021
2021-10-26 08:00 - 2021-10-29 17:00 UTC

NORD Rare Diseases and Orphan Products Breakthrough Summit
2021-10-18 08:00 - 2021-10-19 17:00 UTC

RAREsummit21
2021-10-07 08:00 - 17:00 UTC

DEBRA International Congress 2021
2021-09-16 - 2021-09-19

Duchenne Awareness Day
2021-09-07

World CML Day
2021-09-02

World Orphan Drug Congress (WODC), USA
2021-08-25 08:00 - 2021-08-27 17:00 UTC | Gaylord National Resort & Convention Center, MD, United States
Patient Advocate Groups may apply for a free pass to the event : https://form.jotform.com/212061126179045
