Rare Diseases International

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

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/

UNESCO-IBE, Agrenska, RDI, - Improving inclusion of children living with a rare disease through curriculum transformation
2022-11-28 00:00 UTC
UNESCO-IBE is inviting you to join the webinar on “Improving inclusion of children living with a rare disease through curriculum transformation”, co-organised with the Agrenska Foundation and Rare Diseases International and taking place on 28 November 2022 2:00-4:00 PM – Geneva time – (UTC+1).
Register here : https://unesco-org.zoom.us/webinar/register/WN_fLY9Q7WITmGJnL_F9OT09A
More info here : http://www.ibe.unesco.org/en/event/webinar-improving-inclusion-children-living-rare-disease-through-curriculum-transformation

Asia Pacific Alliance of Rare Disease Organisations (APARDO), Annual Conference
2022-11-25 00:00 - 2022-11-27 00:00 UTC
The Asia Pacific Alliance of Rare Disease Organizations (APARDO) brings together patient advocate leaders from across the Asia Pacific region representing rare diseases and rare cancers, with the goals of sharing experiences and learning, increasing the patient voice, and working together on common goals, facilitating research, sharing resources and best practices, and collaborating on joint initiatives.
Since 2021, countries across the Asia Pacific (APAC) region were slowly returning to “normal” with events becoming “in-person” once again.
This year, we are happy to announce seven planned sessions, collaboration roundtables and networking opportunities over the course of two and a half days.
Location: In-Person Thailand

RAREFEST22
2022-11-25 - 2022-11-26 | The Guildhall Market Square, The Guildhall Market Square Cambridge, Cambridge, CB2 3QB, United Kingdom
FREE to attend, RAREfest22 is a public-facing, 2-day rare disease inspired festival featuring interactive talks, demos and exhibits, film and art showcasing ground-breaking science, visionary technology and pioneering organisations, improving lives and bringing hope to those affected by rare conditions.
FOR THE EXPERTS. FOR THE CURIOUS. FOR ALL AGES. FOR EVERYONE. FOR FREE!

3rd International FAIR data ‘visiting’ for Duchenne & Other Rare Diseases
2022-11-22 14:00 - 22:00 UTC
For the first time, the World Duchenne Organization will team up with RaDiOrg Rare Diseases in Belgium and SMA Europe in Germany to form a wider network of approximately 160 Patient Organizations all interested in how the FAIR principles could make a difference in optimizing the use of patients’ data.

Cobertura Universal de Salud para las enfermedades raras: Preguntas clave
2022-11-17 00:00 (Europe/Paris)
Taller previo a la conferencia
17 de noviembre de 2022
11:00-12:15 GMT-3 / 15:00-16:15 CET
Virtual event → Haga clic aquí para participar : bit.ly/3O8nnVP (no es necesario registrarse antes)
¡Complete la encuesta antes del taller! → https://forms.gle/z9RL5vSeUftpdeAL7

International Scientific Conference on Albinism (ISCA)
2022-11-16 00:00 - 2022-11-19 00:00 UTC
ISCA is a unique scientific conference organized by the Global Albinism Alliance and shaped to be a global forum to improve the health of those with albinism.
(Online Conference)

World Orphan Drug Congress Europe 2022 (WODC)
2022-11-14 - 2022-11-17 | MELIA SITGES HOTEL, SITGES, Barcelona, Spain

World Acromegaly Awareness Day 2022
2022-11-01
Annual Awareness Day on November 1st, to raise awareness for patients diagnosed with Acromegaly.
The goal is to help people with this rare endocrine disease get the timely diagnosis and effective treatment they need and deserve.

World Spina Bifida and Hydrocephalus Day 2022
2022-10-25
The International Federation for Spina Bifida and Hydrocephalus warmly INVITES persons with Spina Bifida and Hydrocephalus from all over the world as well as all interested parties to celebrate the 10th edition of the World Spina Bifida and Hydrocephalus Day (WSBHD) on the topic of “Elevate Your Voice” on October 25 2022. Various activities will take place around the WSBHD22 throughout the month of October. All events, materials, information and latest updates are available on www.worldspinabifidahydrocephalusday.com

The 1st World Patients Conference in Rome (Italy)
2022-10-15 - 2022-10-16 | Crowne Plaza Rome – St. Peter’s, Italy
WPA’s 1st World Patients Conference 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.

#ACT4RARE Toolkit - NEW UN Resolution Toolkit Launch (ONLINE)
2022-10-12 14:00 - 15:00 (Europe/Helsinki)
The UN Resolution on Persons Living with a Rare Disease was adopted in December 2021. Now what? How can you use it? How can you tell you country’s decision makers to act?
Join us for a presentation of the #ACT4RARE Toolkit to raise awareness and call action in the UN Resolution.
The #ACT4RARE toolkit will include :
– A summary of the actions all countries have agreed to take
– Template letters for policymakers
– Social Media kit – with post images and GIFs
And more !

IPOPI’s XVII Global Patients’ Meeting 2022 (In-Person)
2022-10-12 - 2022-10-15 | Gothenburg, Sweden
IPOPI‘s National Member Organisations are all invited to the XVII Global Patients’ Meeting in Gothenburg, Sweden, 12-15 October 2022! Join us for an opportunity to finally meet up with the global PID community in person, and enjoy three days of educational sessions presenting the latest medical advances on primary immunodeficiencies, as well as fruitful discussions and skills-building opportunities.
