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.

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/

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.

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.

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.

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

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.

Mapping Rare Launch Webinar
2024-03-01 14:00 - 15:30 UTC
This Rare Disease Day, join us for the launch of Mapping Rare, an interactive project to showcase the achievements of our global community. The map will be launched here on our on 29 February, followed by a webinar to introduce the project, including a Q & A with the participants

RareX 2024
2024-02-14 - 2024-02-17 | Indaba Hotel, Johannesburg, South Africa, William Nicol Drive, Pieter Wenning Road, Johannesburg, Fourways, Sandton, 2191, South Africa
The Third Biennial Rare Diseases Conference, Rare 2024, takes place in Johannesburg from February 14 to 17, 2024. This conference serves a vital purpose — to unite rare disease patients, dedicated healthcare professionals, and invested stakeholders in a collaborative environment. It’s a place where dialogues about rare diseases and their treatments find expression.
Rare 2024 is more than a conference; it’s a convergence of South African, African and International rare diseases communities. It’s a coming together of innovators, policymakers, and those entrusted with healthcare and reimbursement matters. It’s where the creators of life-changing drugs and health-related essentials gather to forge a way forward to ensure access and equity for those with rare diseases. Amongst the academic and scientific aspects of this conference, patients, caregivers and support groups bring real inspiration, learnings from one another, educating on their missions, and discovering new ways to serve their communities.
Through panel discussions, presentations, and networking, Rare 2024 allows the meeting of minds in the rare diseases community. At the heart of Rare 2024, you’ll find an environment that is not only professional and productive but also deeply caring and inclusive. It’s an opportunity for patients, families, healthcare workers, and stakeholders to come together to learn, grow, and connect.

Members Regional Webinar: Asia Pacific
2024-02-06 15:00 - 16:00 UTC
The purpose of this webinar is to introduce you to the new RDI team, present our latest action plan, and seek your valuable feedback.
Agenda:

Introduction of the RDI Team: Get to know the individuals behind RDI
Presentation of the RDI Action Plan: We will share our strategic action plan outlining our goals, objectives, and the roadmap for the coming months
Consultation by Region: Your input matters. We will open the floor for discussion, questions and feedback

Members Regional Webinar: Europe
2024-02-06 15:00 - 16:00 UTC
The purpose of this webinar is to introduce you to the new RDI team, present our latest action plan, and seek your valuable feedback.Agenda:

Introduction of the RDI Team: Get to know the individuals behind RDI
Presentation of the RDI Action Plan: We will share our strategic action plan outlining our goals, objectives, and the roadmap for the coming months
Consultation by Region: Your input matters. We will open the floor for discussion, questions and feedback

Members Regional Webinar: Africa
2024-02-06 14:00 - 17:00 UTC

Members Regional Webinar: Americas
2024-02-05 16:00 - 17:00 UTC

World Orphan Drug Congress (WODC) Europe 2023
2023-10-30 - 2023-11-02 | Fira Barcelona Montjuic, Barcelona, Spain

RDI Membership Event
2023-10-30 - 2023-11-02 | Fira Barcelona Montjuic, Barcelona, Spain
This will be the first gathering of the RDI Global Patient Community since Pre-COVID19. While RDI and our members have continued to collaborate to advance rare disease at global and local and to support one another, we have missed the personal contact.
Please join us in from 30 October to 2 November 2023 in Barcelona, Spain.
Thanks to the generous support of the World Orphan Drug Congress (WODC) Europe, RDI Members can take part in a number of valuable activities:

RDI Members-Only Meeting (30 October from 2 PM)
Full registration to attend all WODC Europe session (31 Oct – 2 Nov)
Participation in the WODC Europe designated track of RDI patient-focused, patient-led sessions (2 Nov am/pm)

We have compiled some travel information for members attending the event here.

RDI Side Event UN High Level Meeting on UHC
2023-09-21 13:15 - 14:30 (America/New_York) | United Nations Headquarters, Conference Room 7, 405 E 45th St, New York City, NY, 10017, United States
RDI, in partnership with the Spanish Mission to the UN and the Swedish Mission to the UN, will hold a formal side event during the United Nations High Level Meeting on Universal Health Coverage in New York City on September 21th: “Engaging the UN System and Member States to Achieve UHC for PLWRD: A Blueprint for Leaving No One Behind”.
The event will feature high-level participation, including His Excellency Mr Aurélien Rousseau, the French Minister of Health and Prevention, Her Excellency Mrs Acko Ackenberg Johansson, Swedish Minister of Public Health Care, and Her Excellency Dr Hanan Mohammed Al-Kuwari, Minister of Public Health for the State of Qatar. Her Majesty The Queen Silvia of Sweden will also participate in the event via a video statement.
This event is the continuation of years-long advocacy by RDI and its partners. Since the Political Declaration on UHC in 2019, in which rare diseases are specifically mentioned, and the milestone UN Resolution on “Addressing the challenges of persons living with a rare disease and their families”, RDI has solidified the key tenets of UHC for Rare Diseases through regional consultations.
The objective is to highlight national successful actions implementing UHC for rare diseases, to explore methods to reduce the out-of-pocket expenses shouldered by PLWRD and their families, and to draw some quick wins for policy makers and stakeholders to implement.
The event will be in a hybrid format.
For more information, please see the event page.

WOMEN DELIVER 2023 CONFERENCE
2023-07-17 - 2023-07-20
The Women Deliver 2023 Conference (WD2023) will take place in-person in Kigali, Rwanda, as well as virtually, from 17-20 July 2023. As one of the largest multi-sectoral convenings to advance gender equality, WD2023 will convene 6,000 people in Kigali and 200,000+ people online through the virtual Conference and six-month Global Dialogue leading up to the Conference.

BALANCING LIFE WITH OI
2023-06-09 00:00 - 2023-06-10 00:00 (Europe/Paris)
The Balancing Life with OI is a meeting that will take place in Stockholm, Sweden, on 9 to 10 June 2023. Registration is now open. OIFE is organising a topical meeting on the neglected subject of the causes, assessment and management of pain in OI and its impact on physical and mental health, sleep, fatigue, mobility, relationships and work/life balance.

World Orphan Drug Congress USA 2023
2023-05-02 08:00 - 17:00 UTC | May 23 -25; Washington DC, USA

RE(ACT) Congress & IRDiRDC Conference
2023-03-15 - 2023-03-18
The BLACKSWAN Foundation and IRDiRC, the International Rare Diseases Research Consortium, will host the joint event on rare disease research, drug development, access and patient engagement.

Third International Summit on Human Genome Editing
2023-03-06 - 2023-03-08 | The Francis Crick Institute, London UK, London, United Kingdom
The Third International Summit on Human Genome Editing is taking place 6-8 March 2023 at the Francis Crick Institute, London UK and registration is now open for attendance either in person or online. The summit will build on previous events held in Washington, DC (2015) and Hong Kong (2018), continuing the global dialogue on somatic and germline human genome editing. Major themes for discussion include results from the first somatic genome editing clinical trials, developments in both somatic and heritable genome editing tools and the social and ethical considerations these scientific developments entail. The three-day event is being organised by the Royal Society, the UK Academy of Medical Sciences, the US National Academies of Sciences and Medicine and The World Academy of Sciences. More details, including the agenda and speakers, and registration can be found on the Summit’s event page.

Register : https://royalsociety.org/science-events-and-lectures/2023/03/2023-human-genome-editing-summit/

3RD INTERNATIONAL RARE DISEASES CONFERENCE 2023: GREEK CHAPTER
2023-02-28 - 2023-03-01
The 3rd International Conference on Rare Diseases organized by Rare Diseases Greece (RDG), “95” Rare Alliance Greece and Boussias, following the World Rare Disease Day 2023, will take place on February 28 & March 1, 2023.

1st International UAE Rare Disease Society Congress
2023-02-25 - 2023-02-26
For the First time, the 1st International UAE Rare Disease Society Congress aims to gather all the patients’ community who is suffering with rare diseases conditions with the help of our genetic scientists, clinical geneticists and different subspecialties for rare disease.
This one-of-a-kind event will bring together important clinical practitioners, academics, and experts to debate community concerns both locally and worldwide.

IN-PERSON from February 25-26, 2023.

Register here : https://rarediseases.ae/uae-rare-disease-society/

FORO DE ALTO NIVEL X ENCUENTRO/CONGRESO IBEROAMERICANO DE ENFERMEDADES RARAS, HUÉRFANAS O POCO FRECUENTES
2023-02-09
Ibero-American Rare Diseases Alliance (ALIBER) Annual Conference, on 9 February 2023 in Costa Rica. See event agenda.

Webinar - What is a Rare Disease
2023-02-02 14:00 - 14:45 (Europe/Paris)
A deep-dive into the internationally endorsed Operational Description of Rare Diseases, a common reference developed by Rare Diseases International (RDI) working with an expert panel and collaborating with the World Health Organization.
Register : https://us02web.zoom.us/meeting/register/tZEsdeGqrj0tE9f21OLViF6A6ylP-FlWVWYe

Advocacy in Hemophilia 2022 series
2022-12-14 18:00 - 19:30 (Europe/Paris)
Join the last series session on “Advocacy for Hemophilia” :
“Crafting a Path that Leaves No One Behind : Ethical and realistic policy considerations for the future of hemophilia care”

December 14, 2022, 10-11:30am ET

Register for free : http://bit.ly/3VbjxgU

UHC DAY 2022 - UNIVERSAL HEALTH COVERAGE FOR RARE DISEASES
2022-12-12 14:00 - 15:30 (Europe/Paris)
On UHC Day 2022, we call for Universal Health Coverage (UHC) for rare diseases and identify the next steps towards making it a reality for the over 300 million Persons Living with a Rare Disease (PLWRD) worldwide.

Expert speakers will present the main pillars of UHC for rare diseases, and bring regional examples of positive developments for PLWRD since the Political Declaration on Universal Health Coverage in 2019.
Register: https://bit.ly/UHCRARE

Duchenne Patient Academy 2022
2022-12-01 00:00 - 2022-12-03 00:00 UTC
Duchenne Patient Academy is a collaboration between the World Duchenne Organization and Duchenne Data Foundation. It aims to inspire and equip patient advocates to become change makers and build a better future for people living with dystrophinopathies. So far, it has trained over 500 DMD/BMD patient advocates from 52 countries.
ONLINE
Applications for Duchenne Patient Academy open mid-September.

International Conference on Clinical Research Networks for Rare Diseases
2022-12-01 - 2022-12-02
The International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD) are jointly organizing a two-day conference on clinical research networks (CRNs) for rare diseases, which will take place on December 1 and 2. The objective of this conference is to gather experts from different continents to increase mutual knowledge on CRNs structure, activities and identify pathways to stimulate collaboration and interoperability of these networks.
More information: https://cutt.ly/hVSG5hB

Unite Annual Summit 2022
2022-11-29 - 2022-11-30
On November 29 and 30, the Global Heart Hub is bringing together patient representatives from all over the world for the second Unite Annual Summit. (Free Virtual Event)
Register : https://globalhearthub.org/unite-annual-summit/
