Members Webinar: WHA Resolution 2025
2024-03-28 14:00 - 14:45 UTC
Join us for a webinar on the WHA Resolution 2025. Open to RDI Members.

Members Webinar: Understanding the WHO Essential Medicines List: Implications for Rare Diseases
2024-04-12 14:00 - 15:00 UTC

World Federation of Hemophilia Congress
2024-04-21 08:00 - 2024-04-24 17:00 UTC | Madrid, Spain
Get ready to embark on an unparalleled journey into the world of inherited bleeding disorders—which are rare diseases—at the WFH 2024 World Congress. Taking place in Madrid, Spain from April 21 to 24, the event is co-hosted by the World Federation of Hemophilia (WFH) and La Federación Española de Hemofilia (Fedhemo). With over 90 hours of educational content meticulously curated across eight tracks, this event promises to be the most important meeting in the field this year. From engaging workshops and plenary sessions to informative poster presentations, attendees will have the opportunity to immerse themselves in the latest advancements, insights, and discussions related to inherited bleeding disorders care.
With networking events, language interpretation services, and celebratory moments as part of the program, the WFH 2024 World Congress promises an enriching and unforgettable experience for all attendees. Learn more and register here.

World Orphan Drug Congress USA
2024-04-23 08:00 - 2024-04-25 17:00 UTC | Boston Convention and Exhibition Center, Boston, Mass, USA, 415 Summer St, Boston, MA, United States
The World Orphan Drug Congress USA is the defining event for the rare disease and orphan drug space globally. Widely regarded as the most important event for all rare disease stakeholders to attend, we are yet again bringing together top thought leaders from around the globe for our 2024 edition with even bigger ambitions to pave the future for rare diseases.
Returning to the Boston Convention & Exhibition Center April 23-25, this upcoming event will cover conversations on next generation therapies, clinical development and regulatory, global market & patient access, advanced therapies, rare disease advocacy, and more! Hear from industry leaders as they share cutting-edge insights, like visionaries Peter Marks (FDA) and Peter Saltonstall (NORD).
Mark your calendar and join the event making a difference in the lives of individuals and families living with a rare disease. Get your ticket here to get in on the best networking experience the orphan drug and rare disease space has to offer.
You can view the agenda here.

European Conference on Rare Diseases and Orphan Products
2024-05-15 - 2024-05-16
The ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe.
By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future.
With over 1000 participants, the Conference is an unrivalled opportunity to network and exchange invaluable insights within the rare disease community. Through collaborative efforts, these discussions culminate in clear policy recommendations that can influence both EU and national policies.
Mark your calendars for the next ECRD, a fully hybrid conference taking place on 15 & 16 May 2024 online and at The Square in Brussels.

MENA Congress for Rare Diseases
2024-05-16 - 2024-05-19 | Beach Rotana, Abu Dhabi, United Arab Emirates
MENA Congress for Rare Diseases will be held in Beach Rotana, Abu Dhabi,
United Arab Emirates from 16 to 19 May 2024. This conference will be the largest
event for rare diseases in the region and will last for 4 days during which more than
100 speakers, including more than 30 international experts, will give the most
updated knowledge in more than 100 presentations, workshops, and group meetings
in various fields related to rare diseases. The meeting will also accept abstracts
related to rare diseases, and the best submitted abstracts will be presented orally
and receive awards. Other abstracts will be presented as posters. This conference is
a unique platform that brings all parties involved in rare diseases to one place to
obtain the most updated knowledge, increase awareness, exchange experience,
advance research, establish networks, explore collaborative opportunities, and
provide better care for individuals with rare diseases. We look forward to seeing you
among us at the MENA Congress for Rare Diseases. For more information and
registration please visit the website: https://menararediseases.com/

World Health Assembly Side Event, Geneva
2024-05-29 18:00 - 21:00 UTC | Restaurant Vieux Bois, 12, avenue de la Paix, Geneva, CH-1202, Switzerland
A side event to be held alongside the World Health Assembly in Geneva. The event will be followed by a cocktail reception.

NORD Living Rare, Living Stronger Patient and Family Forum
2024-06-07 - 2024-06-08
The 2024 NORD® Living Rare, Living Stronger® Patient and Family Forum will be held in Los Angeles, CA at the Hilton Universal City on June 8. After six years, we are excited to bring this program to the west coast! This event will bring together the incredible rare disease community for a day filled with learning, networking, and relationship building. The Living Rare Forum is an opportunity for people living with rare diseases and their families to come together, often for the first time, to gain practical knowledge on how to manage their health and live their best rare lives.
Program topics often include sessions about how to advocate for yourself in the healthcare system, how to coordinate your medical care team, and how get involved in rare disease research and advocacy. This is a program you don’t want to miss!

World Congress for Rare Skin Disorders
2024-06-12 08:00 - 2024-06-14 17:00 UTC | Maison Internationale, Cité Internationale de l’Université de Paris, 17 Boulevard Jourdan, Paris, 75104, France
The objectives of the congress are:
To share knowledge on diagnosis (including pathophysiology and disease classification) and management of rare and complex skin disorders (skin cancers and aggressive tumors, autoimmune bullous diseases, complex vascular malformations and tumors, auto-inflammatory and autoimmune cutaneous disorders, toxiderma, ectodermal dysplasia and incontinentia pigmenti, DNA Repair Disorders & photosensitivity, monogenic fibrosing diseases, epidermolysis bullosa and skin fragility, cornification disorders)
To develop a multidisciplinary approach and improve skills to manage common problems in rare and complex skin disorders
To know more about the latest research findings and tools in the field of skin biology, genetics, therapeutics
To learn more about patient engagement and empowerment as well as patient education programmes

IFPA conference (World Psoriasis and Psoriatic Arthritis Conference)
2024-06-27 08:00 - 2024-06-29 17:00 UTC
Established in 2006, the IFPA Conference (also known as the World Psoriasis & Psoriatic Arthritis Conference) provides a unique, cross-specialty platform. Medical and health professionals present frontline clinical research in dermatology, rheumatology and beyond. Delegates can explore psoriatic disease from different perspectives by networking with patients and industry representatives in attendance. The IFPA conference calls for breakthroughs in research that will improve the understanding of all aspects of psoriatic disease.
The next conference will be held 27-29 June, 2024 in Stockholm, Sweden.
The theme of this Conference is: Uncovering the broad spectrum of psoriatic disease
Principles of the IFPA Conference:
Increase global recognition of the seriousness of the diseases and to develop a broader international perspective of psoriatic disease
Encourage collaboration on developing future research and advocacy initiatives.
Increase awareness by medical professionals and industry of the role of IFPA and its members in assisting the medical advancement in psoriatic disease.
Developing a scientific program for all:
Patients in IFPA’s network propose themes in a global survey
The Scientific Executive Committee develops the Conference program with patient priorities in focus
The Scientific Advisory Board reviews the program for quality assurance
The IFPA Conference aligns scientific progress with patient priorities, unleashing breakthroughs for experts of all backgrounds

WHA Resolution on Rare Diseases Webinar
2024-08-30 14:00 - 15:30 (Europe/Paris)
This year, Rare Diseases International has begun advocating for the World Health Assembly to have a Resolution on Rare Diseases in 2025, and we need your help to make it a success. This webinar, co-hosted by RDI the Arab Republic of Egypt, the State of Qatar, and Spain will be an opportunity to explain in more detail the opportunities to improve the lives of persons living with a rare disease (PLWRD) and the need to make the Resolution a reality.
Join us to learn more about:

The challenges of PLWRD and opportunities to improve equity for PLWRD
Why a Resolution is critical and what it will bring at regional and national levels
How you can support this initiative

Download ” Towards a WHA Resolution on Rare Diseases” Webinar Concept Note.

RDI Side Event @ WHS2024: Why Prioritize Rare Diseases in Global Health Policy?
2024-10-13 09:00 - 10:30 UTC | Brazzaville Lounge, JW Marriot Hotel, Berlin Germany, Brazzaville Lounge, JW Marriott Hotel, Berlin, Germany
RDI will be hosting a side event “ Why Prioritize Rare Diseases in Global Health Policy” at the World Health Summit in Berlin from 13-15 October.
The overall objective of the event is to engage Ministries of Health, the WHO, World Bank, IFPMA representatives and rare disease organizations in a discussion on why it is critical to prioritize rare diseases on the global health agenda, notably through a WHA Resolution on Rare Diseases. The event aims to explore how to address an existing unmet need in healthcare by calling attention to the challenges faced by PLWRD and their families and showcasing successful initiatives developed worldwide, and to emphasize the importance of a WHA Resolution on Rare Diseases.
In particular, the event will:

Highlight the significance of investing in rare diseases within the context of UHC.
Discuss the significance of the WHA Resolution on Rare Diseases and what it will bring to the rare disease community worldwide.
Explore the challenges faced by research and development and innovation in rare diseases.
Showcase innovative solutions and financing mechanisms that can improve access to care for individuals with rare diseases and explore the link with the WHA Resolution on Rare Diseases and corresponding Global Action Plan.
Facilitate discussion and knowledge-sharing among stakeholders on best practices and future directions in health systems financing for rare diseases.

Limited free passes to the event and the World Health Summit are available to RDI Members on a first-come, first-serve basis. We invite you to attend our event in-person by contacting comms@rarediseasesint.org to secure your place here:
Register here for the in-person event in Berlin.
If you will not be at the World Health Summit, you can also follow the livestream of the session on RDI’s social media channels – Register here for the online event.

Congress on Rare Diseases for Latin America and the Caribbean
2024-10-16 08:00 - 2024-10-17 17:00 UTC
Americas Health Foundation (AHF) presents the second edition of the Congress on Rare Diseases for Latin America and the Caribbean, a hybrid event designed to delve into the challenges and opportunities related to rare diseases in the region. This congress will address critical issues such as access to treatment, regulation, infrastructure, registration and public policy. The congress will have a solutions-based approach to propose viable and actionable recommedations that benefit patients, their families, healthcare systems and society at large.
This event will bring together a wide range of key stakeholders, including patient organizations, medical and academic associations, public sector representatives and the pharmaceutical industry. Together, these participants will work to generate synergies and formulate recommendations to help overcome the challenges faced by the rare disease community in Latin America and the Caribbean.
The second edition of the Rare Disease Congress for Latin America and the Caribbean promises to be a dynamic and enriching space, where collaboration and commitment will be key to advancing the improvement of care and treatment of rare diseases in the region.

RDI Membership Meeting
2024-10-21 13:00 - 2024-10-22 17:00 UTC | Hotel SB Plaza, Carrer de les Ciències, 11, 13, 08908 L'Hospitalet de Llobregat, Barcelona, Spain
RDI will hold a Membership Meeting over 1.5 days from 21-22 October in Barcelona, Spain, followed by our participation in the World Orphan Drug Congress – Europe from 23-25 October.
Details to follow.

XI Congreso/Encuentro Iberoamericano
2024-11-07 - 2024-11-08 | Lima, Peru
II0 Foro de Alto Nivel
El objetivo que la Alianza Iberoamericana de Enfermedades Raras pretende conseguir con este Foro de Alto nivel es generar un espacio a los diferentes Ministerios de Salud de intercambio de buenas prácticas que incidan en la necesidad de implementar la Resolución de las Naciones Unidad en todos los países de Latinoamérica, así como impulsar dicha Resolución en la Organización Mundial de la Salud – OMS y lograr que se incorpore en la agenda de la Cumbre de Jefes de Estado la necesidad de abordar el tema de las Enfermedades Raras.

RDI Members Information Session on the WHA Resolution
2025-01-16 14:00 - 15:00 UTC
This webinar will be an opportunity to explain in more detail the background for the WHA Resolution on Rare Diseases, as well as the progress that has been made so far, the current status of the initiative, and next steps.
It will also be an opportunity for members to ask questions and clarify anything about the initiative. to update on the resolution activities, launch the coalition, and discuss next steps in the resolution process.

Global Albinism Alliance : ISCA 2025
2025-01-21 08:00 - 2025-01-24 17:00 UTC
Join the Global Albinism Alliance at the 2025 International Scientific Conference on Albinism.
The event will be held virtually from January 21-25.
If you would like to attend and haven’t registered yet, you can register here. The deadline for registration is on 15 January.
Learn more about the programme here.

3rd Brazilian Health Technology Assessment (HTA) Forum for Rare Diseases
2025-02-12 09:00 - 17:00 UTC
Instituto Unidos Pela Vida will host the 3rd Brazilian Health Technology Assessment (HTA) Forum for Rare Diseases on February 12, from 9:00 AM to 5:00 PM, BRT. The event will take place at Blue Tree Premium Morumbi in São Paulo, Brazil, and will also be available online via the Congresse.me platform.
The forum aims to provide a platform for discussing Health Technology Assessment (HTA) processes, with a special focus on rare diseases. It will explore the importance of monitoring, the challenges involved, and ways to empower the rare disease community to actively participate in social engagement opportunities.The event will be hosted and moderated by Verônica Stasiak Bednarczuk, founder and executive director of Unidos pela Vida, alongside organization directors Marise Basso Amaral and Cristiano Silveira. The Forum will feature simultenous translation into Brazilian sign language, English, and Spanish. Register here.

RDI PUBLIC WEBINAR: Rare Disease Expertise , Centers and Networks: Results of the Survey
2025-02-12 14:00 - 15:00 UTC
Join us to for a public webinar presenting the results of the RDI’s recent survey on rare diseases expertise.
We will share key findings from the survey on rare disease expertise around the globe, including insights into care-providing centers, networks, and collaborations.
If you would like to attend and haven’t register yet, register here.

Rare Disease Day Webinar-From Grassroots to Global: Growing Momentum towards the WHA Resolution on Rare Diseases
2025-02-27 14:30 - 16:00 UTC
This year’s Rare Disease Day theme “More than You Can Imagine” reminds us of the milestones we have achieved by working together as a global community — most recently, in our collective efforts to advocate for a World Health Assembly Resolution on Rare Diseases.
There is more power, dedication and commitment in our community than we ever imagined, and we are proud to bring our members, partners and friends together to reflect on our progress — how far we have come, and how far we can go.
Join us for a public webinar on Thursday, 27 February 2025 at 14:30 CET and find out how we can imagine a better future for Persons Living with a Rare Disease — together!
Register now.

RE(ACT) Congress and IRDiRC Conference
2025-03-05 - 2025-03-07 | Brussels Pullman Centre Midi
Continuing the legacy of the esteemed IRDiRC Conference series (now in its 6th edition) and the RE(ACT) Congress series (celebrating its 8th edition), this conference brings together visionary leaders, distinguished experts, and emerging talents from diverse scientific domains, converging to unveil groundbreaking research, foster dialogue, and shape policies crucial to rare disease research.
Since its inception in 2012, the RE(ACT) Congress, pioneered by the BLACKSWAN Foundation, has catalyzed scientific collaboration and advancement in rare and orphan diseases. Meanwhile, IRDiRC, established in April 2011 under the auspices of the European Commission and the US National Institutes of Health, has been pivotal in galvanizing global cooperation among researchers, funders, and patient advocacy groups within a multinational framework.
This joint venture of the 8th RE(ACT) Congress and the 6th IRDiRC Conference, in partnership with the European Rare Diseases Research Alliance (ERDERA), Eurordis (the European Alliance of Patient Organizations), symbolizes a unified commitment to surmounting rare disease challenges through collective action and shared knowledge.

5th International Conference on Rare Diseases, Greece
2025-03-27 - 2025-03-28 | Technopolis City of Athens, Athens, Greece
The 5th International Conference on Rare Diseases, organized by RDI Member Rare Diseases Greece, brings together all the key initiatives and stakeholders currently shaping the rare disease landscape with the aim to set a course for the future of rare diseases.

MENA Congress for Rare Diseases 2025
2025-04-17 - 2025-04-20 | Beach Rotana, Abu Dhabi, United Arab Emirates
MENA Congress for Rare Diseases 2025 will take place in Abu Dhabi from 17 to 20 April 2025. It will be the largest event for rare diseases with more than 160 speakers covering variable fields of rare diseases.
You can use the “SPK120” for registration at nominal fee (only 120 AED instead of the regular registration fee of 2400 AED).
For more information and registration please visit the website: https://menararediseases.com/

RDI World Health Assembly Side Event
2025-05-21 18:00 - 21:00 UTC | La Pastorale, Geneva, 106 Route de Ferney, Geneva, Switzerland
Rare Diseases International and partners will hold a side event alongside the World Health Assembly in Geneva, Switzerland on Wednesday, 21 May 2025 at La Pastorale from 6-8:30 PM.
This event will celebrate the significant achievements of our members, community, and partners over the last 10 years and chart the next era of advocacy, policy, research, and care.
With the potential adoption of the WHA Resolution on Rare Diseases, this event presents a unique opportunity to build on the progress our community has achieved and continue towards our goal: Universal Health Coverage for Persons Living with a Rare Disease or condition, no matter where they live.
More information is available here.

RDI Regional Webinar: From WHA Resolution to Action: Next Steps for Latin America and the Caribbean
2025-09-25 17:00 - 18:00 UTC
Join us for a webinar co-hosted by ALIBER, Casa Hunter and ERCAL to learn how we can work together to ensure that the WHA Resolution has real impact for Persons Living with a Rare Disease in Latin America and the Caribbean.

Mapping Rare Webinar
2026-02-17 15:00 - 16:00 UTC
In celebration of Rare Disease Day 2026, join us for a global event highlighting achievements from our global community!
In this special webinar, RDI will spotlight inspiring Mapping Rare projects from around the world, showcasing creativity, the power of community, and the voices making rare diseases visible.
🗓️ 17 February 2026
🕒 3–4pm CET
📲 Register here: https://lnkd.in/db8HRPtj
in English with live Spanish interpreting and multilingual captions
Let’s connect, celebrate achievements, and keep mapping the impact of our global rare disease community

Public Webinar: Is Traditional Health Financing Leaving Rare Diseases Behind
2026-04-23 14:00 - 15:00 UTC
How can innovative financing approaches improve equitable access to diagnosis, treatment, and care for people living with rare diseases?
Join us for a new webinar series bringing together health economists, policymakers, patient advocates, and payers. Through a multistakeholder dialogue, this series will examine key financing gaps and barriers to access, map these challenges to relevant innovative financing mechanisms, discuss enabling conditions for implementation, and inform policy and advocacy actions.
In this first session, we will focus on the structural challenges in current health financing systems — including small patient populations, high treatment costs, HTA limitations, fragmented risk pools, and budget impact concerns — that leave 95% of rare diseases without treatment and millions without access to care. The discussion will explore how these systemic weaknesses contribute to inequities in access to diagnosis, treatment, and care. This session will ground the series in global evidence and set the stage for exploring innovative solutions in the following webinars.
🗓️ Thursday 23rd April, 2pm – 3pm CEST
📲 Registration link
Stay tuned for more details on speakers soon!
This project is being carried out with the support of Fondation Ipsen, under the aegis of Fondation de France.

WHA 79 Side Event - Rare Diseases: a Catalyst for Global Health Transformation
2026-05-20 18:00 - 21:00 UTC | Geneva Graduate Institute, Geneva, Switzerland
Rare diseases expose the stress points of our health systems, revealing gaps in diagnosis, care coordination, innovation, data, financing, and access. More importantly, they offer a powerful opportunity:
If health systems are designed to deliver for rare diseases, they can deliver for everyone.
During the 79th World Health Assembly, Rare Diseases International (RDI)  will host a side-event in Geneva entitled “Rare Diseases: A Catalyst for Global Health Transformation“, which will bring together policymakers, patient advocates, industry leaders, researchers, and global health institutions to explore how achieving UHC requires reaching those who are hardest to reach.
This side event builds on the landmark WHA Resolution “Rare Diseases; a global health priority for equity and inclusion” adopted at the 78th WHA, which recognized rare diseases as a global health priority, and called for the development of a 10-Year Global Action Plan on Rare Diseases (GAPRD). As we move toward implementation of these commitments, it is important to reflect on the transversality of rare diseases and the importance of developing people-centered health systems.
This is about improving the lives of the over 300 million persons living with a rare diseases worldwide, but it’s about scaling innovative solutions and designing systems that are more precise, integrated, person-centred, and equitable.
📍 Geneva Graduate Institute (Geneva, Switzerland)
🗓️ 20 May 2026, 18:00–20:00 (CEST) (Cocktail reception to follow until 21:00 CEST)
Stay tuned for the agenda and speakers! We look forward to convening diverse voices to align on solutions, scale impact, and drive real change across rare diseases and global health.

RDI Membership Meeting: Nairobi, Kenya
2026-06-30 - 2026-07-02 | Novotel Nairobi Westlands, Nairobi, Kenya
RDI’s 2026 annual membership meeting will take place in person in Nairobi, Kenya from 30 June – 2 July 2026. It will be co-hosted by Rare Disorders Kenya.
This event will bring our community together for an engaging programme, featuring:

interactive workshops

capacity building sessions

the Aurora Awards

the RDI Annual General Assembly (AGM)
