Rare Diseases International

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.

Drug Repurposing for Rare Diseases 2022
2022-10-10 | America Square Conference Centre, London, 17, One Crosswall, America Square,, London, EC3N 2LB, United Kingdom
Drug Repurposing for Rare Diseases highlights the role that drug repurposing can play in lowering the cost and accelerating the development of rare disease treatments.
An event unique in its collaborative and multi-stakeholder focus, we bring patient groups, researchers and industry professionals together to showcase excellent examples of rare repurposing.

2022 Rare Neuroimmune Disorders Symposium
2022-10-07 - 2022-10-09
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. On October 7 – 9, 2022, the RNDS will host a hybrid event—participants can choose to attend either in-person, virtually via online streaming, or partly in-person and partly online. An online pre-RNDS will be hosted on September 9, 2022, to dive deeper into topics related to your rare neuroimmune disorder and start meeting others that will attend the RNDS in October. We remain committed to hosting a conference that empowers our rare disease community to become better advocates for themselves and provides valuable resources to keep learning about these rare conditions. For the online-only registration: https://hopin.com/events/2022-rnds.

Online and In person

Science Webinar "Knowledge is power: The urgent need to internationalize databases for rare disease patients"
2022-09-29 18:00 UTC
There are multiple barriers to rare disease diagnosis, including access to testing technologies, availability of knowledgeable health care providers, and lack of uniformity of the phenotype for a given genotype or disease-causing agent. These barriers significantly lengthen the time between detection of a rare disease and its diagnosis, aptly called the diagnostic odyssey.
The collection and sharing of accurate, standardized data are key priorities in shortening the diagnostic odyssey.
During this webinar, the panelists will:

Outline current challenges in creating and maintaining global rare disease patient databases
Share examples of current paradigms shown to be effective and beneficial
Discuss what is needed to improve current systems and make truly useful patient databases a reality.

Science website: https://www.science.org/content/webinar/knowledge-power-urgent-need-internationalize-databases-rare-disease-patients
Registration page: https://view6.workcast.net/register?cpak=5263952065562539

UHC Day campaign kick-off call
2022-09-29 09:00 - 10:00 UTC
Join us for a UHC Day campaign kick-off call on 29 September at 9 a.m. ET, where we will reveal this year’s UHC Day theme, share opportunities to engage with this year’s campaign, and discuss exciting new #HealthForAll partnerships.

Shining light into the black box: Examples of price transparency measures in non-health sectors - Webinar
2022-09-28 08:30 - 09:30 UTC
The webinar will consider some market characteristics (e.g. information asymmetry and market power) common in different sectors, with a view to exploring thoughts about the roles of governments in managing the transparency of pharmaceutical prices.

Webinar on ICD-11 use for Rare Diseases
2022-09-27 14:00 - 15:00 UTC
As part of WHO ICD-11 webinar series, the Classifications and Terminologies Unit in collaboration with the Healthier Populations Division at WHO and Rare Diseases International is organising an ICD-11 webinar that will be held on September 27th, 2022. ONLINE.
An Event co-organised by the WHO and Rare Diseases International.

Primeras Jornadas Iberoamericanas de los Trastornos Hereditarios del Tejido Conectivo
2022-09-27 00:00 - 2022-09-30 00:00 UTC
Burgos, España. Del 27 al 30 de septiembre de 2022.
El programa contempla conferencias, talleres y mesas redondas, y será un lugar de encuentro entre las asociaciones de pacientes de los THTC en Latinoamérica y España.

Lema: Tejiendo redes.
hashtag: #THTC2022
web: https://conectiva.lat/evento/THTC2022

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.
