Past RD events

Past RD Events

28

Nov

2022

CHIST-ERA ERA-NET Call ORD Information Webinar #2

Following the pre-announcement of the theme of the Call ORD, CHIST-ERA organises two information webinars to present the…

  • 14:00 - 15:00
  • Online

24

Oct

2022

ERICA webinar: Practical guide on how to use the Catalogue of services and the IMT

In this webinar, that will take place on October 24th, Anton Ussi (Operations & Finance Director at EATRIS),…

  • 13:00 - 14:00
  • Online

11

Oct

2022

Innovation Bootcamp in Rare Diseases 2022 (IBRD2022) Congress

Registration is now open for the Innovation Bootcamp in Rare Diseases (IBRD2022), sponsored by Congress Care. The event is…

  • 09:00 - 19:00
  • Brussels, Belgium

05

Oct

2022

ANR ICPerMed Conference: Prelude to the Future of Medicine

The Agence Nationale de la Recherche is happy to announce their upcoming ICPerMed Conference, titled “Prelude to the…

  • 09:00 - 17:00 (6 October 2022)
  • Paris, France; and online

03

Oct

2022

CHIST-ERA ERA-NET Call ORD Information Webinar #1

Following the pre-announcement of the theme of the Call ORD, CHIST-ERA organises two information webinars to present the…

  • 14:00 - 16:00
  • Online

14

Sep

2022

ERN eUROGEN webinar: Proximal Hypospadias: Challenges in Surgical Management

ERN eUROGEN is happy to announce their upcoming webinar, titled “Proximal Hypospadias: Challenges in Surgical Management”. Surgical management…

  • 18:00 - 19:00
  • Online

14

Sep

2022

International Scientific Symposium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders

The Ehlers-Danlos Society is organising the International Scientific Symposium on the Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD), a state-of-the-art…

  • 08:00 - 18:00 (18 September 2022)
  • Rome, Italy (with virtual attendance options)

07

Sep

2022

WORLD DUCHENNE AWARENESS DAY 2022: Duchenne and Women

The World Duchenne Awareness Day, taking place each year on September 7th, is the official campaign to raise…

  • 09:00 - 18:00
  • Online

07

Jul

2022

General Assembly of TEDDY Network

The General Assembly of TEDDY Network will be held online, within a hearing at the Council of Europe this July 7th from 9.30 to…

  • 09:30 - 14:00
  • Online

06

Jul

2022

ERN eUROGEN webinar: Williams-Beuron Syndrome: A Focus on Long-Term Patient Care

ERN eUROGEN, ERN ITHACA and ERN ERKNet are organising a webinar on July, 6th 2022, at 18:00 CEST.…

  • 18:00 - 19:15
  • Online

01

Jul

2022

Networking Support Scheme (NSS) event: Taking congenital portosystemic shunts (CPSS) to the next level

A funded networking event “Taking congenital portosystemic shunts (CPSS) to the next level – 2nd meeting of experts”…

  • 08:30 - 16:30 (2 July 2022)
  • Hybrid (Online and Geneva, Switzerland)

29

Jun

2022

ERN eUROGEN webinar: Summer ’22 Update

ERN eUROGEN is organising a webinar on June, 29th 2022, at 18:00 CEST. This webinar will provide an overview…

  • 18:00 - 19:00
  • Online

27

Jun

2022

11th European Conference on Rare Diseases and Orphan Products (ECRD) 2022

The 11th European Conference on Rare Diseases and Orphan Products (ECRD) 2022 is being organized by EURORDIS and co-organized by Orphanet, with…

  • 14:00 - 18:00 (1 July 2022)
  • Online

20

Jun

2022

Networking Support Scheme (NSS) event: European meeting on Phelan-McDermid syndrome

A funded networking event “European meeting on Phelan-McDermid syndrome” is being organised to discuss the guideline recommendations and to…

  • 13:00 - 13:00 (22 June 2022)
  • Groningen, Netherlands

17

Jun

2022

Networking Support Scheme (NSS) event: 2nd International Congress on Biliary Atresia and Related Diseases (BARD)

A funded networking event “2nd International Congress on Biliary Atresia and Related Diseases (BARD)” is being organised to…

  • 09:00 - 17:00 (18 June 2022)
  • Bruges, Belgium

17

Jun

2022

Networking Support Scheme (NSS) event: 3rd International Symposium on Wiskott Aldrich Syndrome (WAS2022)

A funded networking event “3rd International Symposium for Researchers and Clinicians on Wiskott Aldrich Syndrome (WAS2022)” is being…

  • 09:00 - 18:00
  • Munich, Germany

14

Jun

2022

Innovative Health Initiative (IHI) Kick-off and brokerage event

The Innovative Health Initiative (IHI), a European Union public-private partnership funding health research and innovation, is organising a kick-off and brokerage event…

  • 09:00 - 17:00
  • Brussels, Belgium and Online

07

Jun

2022

1st World Congress on Rare Skin Diseases

Organized by the Rare Skin Diseases Network of the René Touraine Foundation, in association with ERN SKIN, the 1st World Congress…

  • 09:00 - 18:00 (9 June 2022)
  • Paris, France

16

May

2022

NIH/FDA Virtual Workshop on Regulatory Fitness in Rare Disease Clinical Trials

The National Institutes of Health (NIH), National Center for Advancing Translational Sciences (NCATS) and the U.S. Food and Drug Administration…

  • 15:00 - 18:00 (17 May 2022)
  • Online

29

Apr

2022

Networking Support Scheme (NSS) event: TREAT AIE European Conference on Autoimmune Encephalitis

A funded networking event “Treat AIE: First European networking conference to provide guidelines and improve treatment of Autoimmune…

  • 14:00 - 13:00 (30 April 2022)
  • Hybrid (Online and Florence, Italy)

20

Apr

2022

Share4Rare webinar: Medical imaging in rare disease diagnosis

The Share4Rare Consortium is organising a webinar to discuss the potential of clinical imaging in rare disease diagnosis and research. The guest speaker…

  • 17:00 - 18:00
  • Online

20

Apr

2022

Chan Zuckerberg Initiative Networking Expo for Patient-Partnered Collaborations (PPC) for Rare Disease

Earlier this year, the Chan Zuckerberg Initiative (CZI) launched two Requests for Applications (RFA) for grant opportunities that will fund collaborative teams bringing…

  • 17:00 - 23:00 (21 April 2022)
  • Online

07

Apr

2022

Joint EMA/HMA/TEHDAS Data Quality Framework for Medicines workshop

The European Medicines Agency (EMA) is organising a joint EMA/HMA/TEHDAS Data Quality Framework for Medicines workshop as a virtual meeting on April 7th from 13.00 – 17.15…

  • 13:00 - 17:15
  • Online

06

Apr

2022

Rare Conversations 2022 Webinar Episode 1: Game changing opportunities for the R&D community to address existing challenges in rare diseases

Rare Conversations invites you for the inaugural episode of the new Rare Conversations event series in 2022, aimed at powering the next…

  • 14:00 - 15:15
  • Online

02

Apr

2022

Networking Support Scheme (NSS) event: International Vasculitis Patient Conference 2022

A funded networking event “International Vasculitis Patient Conference” is being organised as a satellite hybrid event to the 20th International ANCA Vasculitis Workshop…

  • 14:00 - 17:45 (4 April 2022)
  • Dublin, Ireland (and online)

01

Apr

2022

Networking Support Scheme (NSS) event: European Dravet Syndrome Advanced Therapies Meeting (EDSAT)

A funded networking event titled “European Dravet Syndrome Advanced Therapies Meeting (EDSAT)” is being organised so that scientists can share…

  • 08:30 - 15:40
  • Madrid, Spain

31

Mar

2022

Dravet Syndrome Foundation Scientific and Family Days 2022

The Dravet Syndrome Foundation Spain (FSD), a non-profit organisation that promotes, encourages, and connects the world’s leading research centers for Dravet…

  • 08:30 - 19:00 (2 April 2022)
  • Madrid, Spain

29

Mar

2022

Webinar: IMI impact on SMEs in health data management and health IT sectors

The Innovative Health Initiative (IHI) is organising a series of live sessions on Innovative Medicines Initiatives (IMI) Impact, where key actors will explore…

  • 14:00 - 15:30
  • Online

28

Mar

2022

16th Genomics of Rare Disease Virtual Conference

The 16th Genomics of Rare Disease Conference is being organized a virtual event targeted towards professionals in genomics research and clinical care, and…

  • 13:00 - 18:00 (29 March 2022)
  • Online

07

Mar

2022

Online events for 2023 Third International Summit on Human Genome Editing

The UK Royal Society, Academy of Medical Sciences, the US National Academies of Sciences and Medicine and UNESCO-The…

  • 14:40 - 18:00 (9 March 2022)
  • Online

01

Mar

2022

2nd International Conference on Rare Diseases: Greek Chapter

The 2nd International Conference on Rare Diseases is being organized by 95, Rare Alliance Greece. With the theme of “The Balancing Act…

  • 09:00 - 17:30 (2 March 2022)
  • Online

28

Feb

2022

PFUE 2022 Scientific Symposium on Rare Diseases

In the framework of the French Presidency of the Council of the European Union (PFUE 2022), and under the…

  • 09:00 - 12:30
  • Hybrid: Online and at Ministry of Solidarity and Health (Conference Room Laroque), 14 Avenue Duquesne, 75007 Paris, France

28

Feb

2022

Rare Disease Day 2022 at the World Expo Dubai

The NGO Committee for Rare Diseases, Ågrenska Foundation, Rare Diseases International (RDI), and EURORDIS-Rare Diseases Europe are jointly organising their 2022 Global Rare Disease Day…

  • 07:30 - 13:30
  • Sweden Pavilion (Sustainability District), World Expo, Dubai (United Arab Emirates)

17

Feb

2022

EMA webinar on repurposing of authorised medicines pilot programme

In October 2021, the European Medicines Agency (EMA) and the Heads of Medicines Agencies (HMA) announced a pilot project to support the repurposing…

  • 17:00 - 18:00
  • Online

16

Feb

2022

Information webinar on Chan Zuckerberg Initiative's Patient-Partnered RFAs with rare disease focus

The Chan Zuckerberg Initiative (CZI) is inviting applications from collaborative teams bringing together patient-led rare disease organisations and research teams for 4-year research…

  • 18:00 - 19:00
  • Online

15

Feb

2022

Euronews virtual debate on innovation in rare diseases

Euronews has gathered a panel of experts, industry leaders and key players in Brussels to address the issue of how rare…

  • 15:00 - 16:30
  • Online

03

Feb

2022

Networking Support Scheme (NSS) event on vascular liver diseases and associated complications

A funded networking event on vascular liver diseases and associated complications is being organised to give an update on current clinical…

  • 12:00 - 15:15 (4 February 2022)
  • Hybrid (Online and Medical University Vienna, Vienna, Austria)

20

Jan

2022

European Paediatric Translational Research Infrastructure (EPTRI) webinar on medical device development

The European Paediatric Translational Research Infrastructure (EPTRI) is organising a webinar tailored to the development of medical devices (MD),…

  • 11:00 - 13:00
  • Online

18

Jan

2022

EMA Webinar: Research in regulatory science – addressing the needs

The European Medicines Agency (EMA) is organising a virtual event on “Research in regulatory science – addressing the needs” to inform the public and…

  • 10:00 - 12:00
  • Online

14

Dec

2021

EJP RD TRAINING WEBINAR: Does Randomization matter in RD clinical trials?

https://www.youtube.com/watch?v=7rmrN2Cs6C4 General information Rare Diseases (RD) is an area where national and international multidisciplinary collaborations are valuable to…

  • 16:00 - 18:30
  • Online

09

Dec

2021

EJP RD and ERICA meeting on Domain specific Common Data Elements (DCDEs) Curation

EJP RD is co-organising a meeting, along with the European Rare Disease Research Coordination and Support Action consortium (ERICA) and…

  • 16:00 - 17:00
  • Online

01

Dec

2021

First African Summit on Rare Diseases 2021

Rare Disease Ghana Initiative (RDGI), in partnership with Rare Diseases International (RDI), is organising the first African Summit on Rare…

  • 16:00 - 13:00 (3 December 2021)
  • Accra, Ghana (and Online)

29

Nov

2021

EMA Webinar for SMEs and Academia on the Clinical Trial Regulation and the Clinical Trials Information System

The European Medicines Agency (EMA) is organising a webinar for small and medium enterprises (SMEs) and academia on the Clinical Trial Regulation…

  • 09:00 - 13:30
  • Online

23

Nov

2021

VASCERN webinar: Diagnostic and Management Pathway for Severe and/or Rare Infantile Hemangiomas

VASCERN will hold a webinar on Tuesday November 23rd, 2021 from 5pm to 6pm (CET) entitled: Diagnostic and Management Pathway for…

  • 17:00 - 18:00
  • Online

18

Nov

2021

1st International Conference on Rare Diseases and Paediatric Research

The 1st International Conference on Rare Diseases and Paediatric Research is being organized by 95, Rare Alliance Greece together with Consorzio…

  • 08:30 - 16:30 (19 November 2021)
  • Online

15

Nov

2021

World Orphan Drug Congress 2021: Strategy, advocacy and partnering for the orphan drug industry

The World Orphan Drug Congress organised by Terrapinn is a global, multi-stakeholder orphan drugs & rare diseases meeting that aims to provide…

  • 10:30 - 17:00 (18 November 2021)
  • Sitges (Barcelona), Spain

09

Nov

2021

Rare Conversations – European Rare Disease Ecosystem: A Collaborative Path Forward

EJP RD is co-organising the “Rare Conversations – European Rare Disease Ecosystem: A Collaborative Path Forward” conference in cooperation with Alexion, EURORDIS, EUCOPE, and EuropaBio.…

  • 14:00 - 18:00
  • Online

08

Nov

2021

Virtual Congress: Europe Biobank Week 2021

The European, Middle Eastern and African Society for Biopreservation and Biobanking (ESBB) and the European Research Infrastructure on Biobanking (BBMRI-ERIC) are jointly…

  • 10:00 - 17:30 (10 November 2021)
  • Online

08

Nov

2021

EATRIS Winter School 2021: Translational Medicine Explained (TMex)

Interested in discovering the landscape of Translational Medicine? Learn from scientists in academia, industry and regulatory agencies and join…

  • 09:00 - 18:00 (12 November 2021)
  • Online

02

Nov

2021

BioData World Congress 2021: Big Data and Digital Transformation in Pharmaceuticals and Healthcare

The BioData World Congress 2021 organised by Terrapinn is Europe’s largest congress covering big data in pharmaceutical development and healthcare aimed to…

  • 08:30 - 16:00 (4 November 2021)
  • Basel, Switzerland

27

Oct

2021

Ubiquitous Pharmacogenomics (U-PGx) Personalized Medicine Symposium

The Golden Helix Foundation and the Leiden University Medical Center, both partners of the Ubiquitous Pharmacogenomics (U-PGx) project, are co-organising the Personalized Medicine Symposium…

  • 09:00 - 18:00 (28 October 2021)
  • Leiden, the Netherlands

20

Oct

2021

EURORDIS Round Table of Companies workshop: The impact of the EU regulatory network strategy 2020-2025 on the development of orphan medicines

EURORDIS Rare Diseases Europe is organising its 32nd Round Table of Companies (ERTC) workshop on the theme of “The impact of…

  • 14:00 - 18:00 (21 October 2021)
  • Online

18

Oct

2021

National Organization for Rare Disorders (NORD) Rare Breakthrough Summit 2021

The National Organization for Rare Diseases (NORD) is organising its annual NORD Summit 2021, one of the largest multi-stakeholder events in rare…

  • 15:00 - 23:00 (19 October 2021)
  • Online

18

Oct

2021

Genopole Summer School 2021: Bioinformatics and Biostatistical Tools in Medical Genomics

Genopole, the oldest and largest biocluster in France, is organising its Summer School 2021 on statistical methodologies and bioinformatics tools used in genomics and metagenomics in the context of…

  • 14:00 - 18:00 (21 October 2021)
  • Campus des Berges de Seine, 1 route de Beaulieu (D39), 77240 Seine-Port

18

Oct

2021

Better Medicines for Children Conference: Global Paediatric Drug Development Challenges & Solutions

The European Forum for Good Clinical Practice (EFGCP) and the Drug Information Association (DIA) are organising the Better Medicines for Children Conference 2021 on…

  • 11:30 - 18:00 (19 October 2021)
  • Online

07

Oct

2021

IMI impact on patient involvement event

The Innovative Medicines Initiative (IMI) is organising a series of online live sessions on IMI’s Impact, where key…

  • 14:00 - 15:30
  • Online

05

Oct

2021

EFPIA Workshop: Accelerating Adoption of Complex Clinical Trials in Europe and Beyond

The European Federation of Pharmaceutical Industries and Associations (EFPIA) is hosting a multi-stakeholder virtual workshop titled “Accelerating Adoption of Complex Clinical Trials in Europe…

  • 14:00 - 18:30 (6 October 2021)
  • Online

05

Oct

2021

Webinar on Living with SMA: Spotlight on the policy and access environment in Europe

Biogen has collaborated with SMA Europe to develop a tool called the Spinal Muscular Atrophy (SMA) Policy and Access Tracker, which offers…

  • 11:00 - 12:30
  • Online

29

Sep

2021

RWE4Decisions Webinar: Delivering a Health Data Strategy for the European Reference Networks (ERNs)

RWE4Decisions, a multi-stakeholder initiative commissioned by the Belgian National Institute of Health, is organising a webinar entitled “Delivering…

  • 16:00 - 17:30
  • Online

27

Sep

2021

ISPOR Webinar: Health Preference Research in the Context of Gene Therapy in Rare Diseases

The Professional Society for Health Economics and Outcomes Research (ISPOR) is organising a webinar entitled “Health Preference Research in the…

  • 16:00 - 17:00
  • Online

23

Sep

2021

IMPC 10th Anniversary Conference: Mouse Genetics and Genomic Medicine

The International Mouse Phenotyping Consortium (IMPC) is organising a virtual conference titled “Mouse Genetics and Genomic Medicine” to celebrate the occasion…

  • 14:00 - 23:00 (24 September 2021)
  • Online

22

Sep

2021

Webinar: Leaving the darkness – tackling rare bone diseases

Economist Events and Ipsen are organising a webinar entitled “Leaving the darkness: Tackling rare bone diseases” featuring the participation of clinical…

  • 17:00 - 18:00
  • Online

17

Sep

2021

CeBIL Annual Symposium 2021 – Orphan Drug Innovation: Needs and Priorities

The Centre for Advanced Studies in Biomedical Innovation Law (CeBIL) at the University of Copenhagen and the University of Cambridge’s Centre…

  • 15:00 - 17:30
  • Online

13

Sep

2021

Covering Rare Diseases - National Press Foundation

The National Press Foundation is organising a two-day online workshop entitled “Covering Rare Diseases”. The workshop will take…

  • 16:00 - 22:00 (14 September 2021)
  • Online

07

Sep

2021

EuropaBio Advanced Therapies webinar on EU case for equitable patient access to advanced therapies

EuropaBio continues its Advanced Therapies webinar series of events, interviews, and publications with a virtual discussion on avenues for enhancing the…

  • 16:00 - 17:00
  • Online

07

Sep

2021

Online event on Adult Life & Duchenne

The World Duchenne Organization is organizing an online educational event on Adult Life & Duchenne. The free event on…

  • 14:00 - 16:00
  • Online

07

Sep

2021

Virtual Round Table: Revision of the European Orphan & Paediatric Regulation and impact for the Nordic Rare Disease Community

The European Confederation of Pharmaceutical Entrepreneurs (EUCOPE) is organising a multi-stakeholder round table discussion on the theme of the future of rare diseases…

  • 12:00 - 13:30
  • Online

21

Jul

2021

RDCA-DAP Webinar: How the platform can help inform optimal trial design in progressive rare disease

As part of The Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP) webinar series on the use of rare disease…

  • 18:00 - 19:00
  • Online

07

Jul

2021

U.N. Political Forum 2021 High-Level Side Event: Addressing the challenges of persons living with a rare disease

The United Nations Political Forum on Sustainable Development (HLPF) is co-organising a High-Level Side Event titled “On the road towards COVID-19 recovery &…

  • 14:00 - 15:30
  • Online

06

Jul

2021

ERN-Skin rare skin disease webinar: Combined cell and gene therapy for Epidermolysis Bullosa

The European Research Network for rare skin diseases (ERN-Skin) is launching a series of scientific webinars on rare skin diseases. Each 1-hour…

  • 13:00 - 14:00
  • Online

29

Jun

2021

ERN-Skin rare skin disease webinar: Genetic discoveries in ichthyosis

The European Research Network for rare skin diseases (ERN-Skin) is launching a series of scientific webinars on rare skin diseases. Each 1-hour…

  • 13:00 - 14:00
  • Online

23

Jun

2021

Scientific CDG Symposium 2021 (Virtual)

Registration are open until 30 April 2021 (deadline for Early Bird registration) Abstract Submission are open until 31…

  • 11:00 - 18:30 (24 June 2021)
  • Online

23

Jun

2021

European Research and Innovation Days 2021

The European Commission (EC) is organising its annual flagship Research and Innovation event, titled “European Research and Innovation Days 2021”, bringing together policymakers, researchers, entrepreneurs and…

  • 09:00 - 18:00 (24 June 2021)
  • Online

16

Jun

2021

RDCA-DAP Webinar: Value of Integrated Data and Analytics in Rare Disease Drug Development

As part of The Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP) webinar series on the use of…

  • 18:00 - 19:00
  • Online

16

Jun

2021

PedCRIN Final Event: Fostering International Paediatric Clinical Research

Paediatric Clinical Research Infrastructure Network (PedCRIN), a project of ECRIN, announces its PedCRIN Final Event on “Fostering International Paediatric Clinical Research” and invites…

  • 09:30 - 13:00
  • Online

15

Jun

2021

Findacure’s Drug Repurposing for Rare Diseases Conference 2021

Findacure, a UK-based nonprofit that works in the rare disease sector, is organising its annual Drug Repurposing for Rare…

  • 12:00 - 19:00 (16 June 2021)
  • Online

15

Jun

2021

EOSC Symposium 2021: Implementing an inclusive European Open Science Cloud

The European Open Science Cloud (EOSC) Secretariat is organising a symposium on the theme of “Implementing an inclusive European Open Science Cloud”, representing…

  • 09:00 - 15:30 (18 June 2021)
  • Online

11

Jun

2021

Orphan Drug Expert Group Webinar: Addressing the unmet needs of rare disease patients

The European Expert Group on Orphan Drug Incentives (OD Expert Group), in collaboration with media partner EURACTIV, is organising a webinar on…

  • 14:30 - 16:00
  • Online

08

Jun

2021

Share4Rare webinar: Setting the Path for Next Generation Data Sharing

The Share4Rare Consortium is organising a webinar to share the findings and outputs of four years of the Share4Rare project, setting the base…

  • 15:00 - 18:00
  • Online

03

Jun

2021

NIH Virtual Roundtable on Gene-Targeted Therapies: Early Diagnosis and Equitable Delivery

NCATS along with NICHD and NINDS of the National Institutes of Health (NIH) are co-hosting a virtual NIH roundtable meeting on the theme of Gene-Targeted Therapies: Early Diagnosis…

  • 18:00 - 22:30 (17 June 2021)
  • Online

03

Jun

2021

ProDGNE Kick-Off Webinar

The ProDGNE consortium, funded as part of the EJP RD’s Joint Transnational Call 2020 “Pre-Clinical Research to Develop Effective Therapies for…

  • 18:00 - 19:00
  • Online

01

Jun

2021

World Duchenne Organization announces Duchenne Care Conference 2021

The World Duchenne Organization (WDO) is hosting an online Duchenne Care Conference intended for patients, family members, clinicians and others involved in the care of individuals affected by…

  • 00:00 - 00:00 (4 June 2021)
  • Online

31

May

2021

Tech4Growth Health Workshop series: Building Impactful Partnerships Between Start-ups – Corporates – Academia

The Swiss Biotech Association, in collaboration with EFPL Innovation Park and Innosuisse, are organizing a series of Tech4Growth Health workshops as part of their “TFV –…

  • 13:30 - 15:30 (2 July 2021)
  • Online

26

May

2021

European Conference on the Diffusion of Genomic Medicine: Health Economics & Policy

As part of Solve-RD, Solving the unsolved rare diseases, a European project H2020 on genetic research, the Health Economics Team…

  • 15:30 - 19:45 (28 May 2021)
  • Online

26

May

2021

FAIRplus Project Webinar: Discovering the FAIR Cookbook

The FAIRplus project, which aims to develop tools and guidelines for making life science data FAIR (Findable, Accessible, Interoperable, Reusable) is organizing a webinar…

  • 14:00 - 15:00
  • Online

21

May

2021

16th International Congress on Neuromuscular Diseases

The Neuromuscular Disorders Applied Research Group of the World Federation of Neurology is organizing its 16th Annual Congress on Neuromuscular Diseases. The fully virtual…

  • 12:00 - 18:00 (29 May 2021)
  • Online

12

May

2021

Curating the Clinical Genome Virtual Conference

Pr. Gert Matthijs, partner of EJP RD, is part of the Scientific Programme Committee of this year’s Curating…

  • 11:00 - 18:00 (14 May 2021)
  • Online

11

May

2021

Action for Rare Disease Empowerment (ARDEnt) Webinar on "Making the Unseen Seen" Report

Action for Rare Disease Empowerment (ARDEnt), a cross-sector coalition 30 UK-based experts in rare diseases, is organizing a webinar…

  • 20:00 - 21:00
  • Online

11

May

2021

GBT Webinar on Inequalities in Healthcare – Spotlight on Sick Cell Disease Patients in Europe

Global Blood Therapeutics (GBT) is organizing a European multi-stakeholder roundtable event titled “Addressing Inequalities in Healthcare – Spotlight on Sickle Cell Disease…

  • 14:30 - 16:00
  • Online

11

May

2021

EuropaBio Advanced Therapies webinar on value of advanced therapies

EuropaBio invites you for its first webinar in the Advanced Therapies series of events, interviews, and publications titled “Taking health up…

  • 12:00 - 13:00
  • Online

05

May

2021

RARE Conversations Webinar on Research In Rare Diseases: Specificities And Needs

Alexion’s Rare Conversations invites you for its third webinar (Take Three) on Research In Rare Diseases: Specificities and…

  • 14:00 - 15:30
  • Online

27

Apr

2021

Share4Rare webinar for neuromuscular diseases (NMD) patients and caregivers

Share4Rare, in collaboration with the World Duchenne Organization and the John Walton Muscular Dystrophy Research Centre, is hosting…

  • 13:00 - 14:00
  • Online

21

Apr

2021

RDCA-DAP: Searching, visualizing and exploring data in the RDCA-DAP platform to identify data of interest for advanced analysis

Register here Example Disease: Friedreich’s ataxia Presenters: Amanda Borens, MSc, Executive Director, Data Science, DCC; Vicki Theurer Crider, Sr. Project Manager, DCC;…

  • 17:00 - 18:00
  • Online

10

Mar

2021

10th International Meeting on Neuroacanthocytosis Syndromes - Networking event

March 10-12, 2021- online event Neuroacanthocytosis syndromes (NA) are a group of rare, but devastating, neurodegenerative disorders, with…

  • 15:00 - 21:15 (12 March 2021)
  • Online

01

Mar

2021

1st International Conference on Rare Diseases “Building a Pathway from Diagnosis to Access''

1- 2 March 2021 ONLINE The 1st International Conference on Rare Diseases “Building a Pathway from Diagnosis to…

  • 09:00 - 17:00 (2 March 2021)
  • Online

26

Feb

2021

Heritable Human Genome Editing Rare Disease Week Discussion

Heritable human genome editing has been proposed as a means of helping parents avoid passing genetic diseases to…

  • 15:00 - 16:30