Here is a list of national and international, online and on-site events related to rare skin diseases

Please note that most online events share their content and presentation on their platform for several months: feel free to check them out!

2024

19e Giornate: Le malattie rare in dermatologia pediatrica

November 29th-30th, 2024

The 19th Italian congress on “Rare diseases in pediatric dermatology” will take place on November 29th and 30th, 2024 in Rome, Italy. Your can now access the full program here and discover all the sessions and more.

More information here


EJP RD – Free online course: MOOC on “Health Data Ethics & Regulatory Frameworks in Rare Disease Research”

From May 6th to June 28th, 2024

The third EJP RD MOOC on “Health Data Ethics & Regulatory Frameworks in Rare Disease Research” is launching today!
Developed by Foundation For Rare Diseases, EURORDIS, ERN EpiCARE and Gianni Benzi Foundation, our MOOC promises valuable insights and knowledge expansion.
From May 6th to June 28th, join  for an enriching learning experience with expert educators on hand to address your queries. Engage with lead educators and fellow participants throughout the course.

More information here


Final EJP RD Conference registration deadline has been extended to MAY 22nd!

From May 27th- 28th: Deadline registration extended to MAY 22nd!

The registration deadline for the Final European Joint Programme on Rare Diseases Conference has been extended to May 22nd, 2024.  Join the conference on May 27-28, 2024 for engaging sessions on rare disease research, register here.

  • Check out the agenda for a sneak peek into the sessions and plan your conference experience and find more information here

CMTC-OVM – Family Weekend 2024: Program and registration available!

May 25th-26th, 2024

CMTC-OVM will organize in 2024 a third event to meet each other! In addition to the well-known Family Day in the Efteling (this year on Saturday 6 July) and their members conference on 26 and 27 October, they are now also organizing a Family Weekend on Saturday 25 and Sunday 26 May 2024!

For more information about the program and for registration, click here


EURORDIS – 12th European Conference on Rare Diseases (ECRD)

May 15th-16th, Brussels and online!

Eurordis organizes its 12th European Conference on Rare Diseases (ECRD) from May 15th to 16th, 2024 in Brussels and online.

The Conference is an unrivalled opportunity to network and exchange invaluable knowledge with over 1,500 advocates, experts, policymakers and industry professionals from the rare disease community. Join us in identifying key priorities, uniting stakeholders from across Europe and beyond, to forge a unified approach for the next EU legislative cycle.

More information here


Art contest – My Skin and You

From February 29th to April 29th 2024: Deadline extended to MAY 15th!

The René Touraine Foundation and its international network on Rare Skin Diseases have been organizing an international art contest since 2015: The Story of my Skin / Ma peau raconte. This year’s theme is My Skin and You

The aim of this event is to raise public awareness of rare skin diseases, to allow patients to express themselves and to encourage discussion.

Please find more information here


Art contest – Skin to skin

From February 28th 2023 to May 31st 2023

The René Touraine Foundation and its international network on Rare Skin Diseases have been organizing an international art contest since 2015: The Story of my Skin / Ma peau raconte. This year’s theme is Skin to Skin.

The aim of this event is to raise public awareness of rare skin diseases, to allow patients to express themselves and to encourage discussion. Please find more information here


Rare Diseases Day

February 28th

World Diseases Day is a globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.

  • It was set up and is coordinated by EURORDIS and 65+ national alliance patient organization partners.
  • It provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.

Please find more information here: https://www.rarediseaseday.org/what-is-rare-disease-day/


NEW ERICA WP4 Webinar: Essential requirements before thinking about a clinical trial

Tuesday 28 February 2023 12:00 – 13:00 CET

In this webinar, Viviana Giannuzzi, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus will overview what should be done at the very least before starting a clinical trial in a study site. All the requirements will be discussed according to the role that an investigator may have in the trial. Some guidance and sources will be also provided.

More information about the Webinar, here.

Organised by ERICA in collaboration with EJP RD and ERN BOND

Additional information, registration and updates at ERICA website

Please submit any questions to ERICA WP4 team francesca.gurioli@ior.it or ERICA coordinating office


An European Medicines Agency (EMA) survey about the development of a multi-stakeholder platform to promote collaboration for improving clinical trials in the EU!

EUSurvey – Survey (europa.eu) – open until 03 March 2023 at midnight CET!

We have been asked by European Medicines Agency to inform you of the launch of a public consultation concerning the development of a multi-stakeholder platform to promote collaboration for improving clinical trials in the EU as foreseen by Accelerating Clinical Trials in the EU (ACT EU) priority action 3.

This platform will enable regular dialogue between all EU stakeholders on clinical trials, and facilitate the evolution of the clinical trials environment by helping to identify key advances in clinical trial methodologies, technology and science. The platform will serve as a neutral space for the discussion of challenges and the development of practical solutions to enable and drive change. It is envisaged that there will be several phases of development before reaching its final design.

A concept paper outlining the proposal for the creation of the platform has been published together with the public consultation. The objective of which is to gauge interest in the platform, get feedback on priority topics for discussion, and provide comments on the proposal. The multi-stakeholder platform will have its kick-off meeting in Q2 2023.

The public consultation can be accessed at the following survey EUSurvey – Survey (europa.eu) and will remain open until 03 March 2023 at midnight CET.

Those interested can find more information on the web page Accelerating Clinical Trials in the EU (ACT EU).

For any questions, stakeholders can contact ACTEU@ema.europa.eu


EJP-RD Advanced Course “Statistical and Operational Challenges with Master Protocols”

March 24th, at 4-6:30 pm CET

Join the upcoming fourth EJP-RD advanced course titled “Statistical and Operational Challenges with Master Protocols,” held by Professor Franz König. The course will take place on March 24th, 2023 at 4-6:30 pm CET.

Please note that preregistration is mandatory to secure your spot. Additional details, including how to register, can be found on the EJP RD website.


ERN-Skin Workshop: Epidermolysis bullosa: from genes to translation into therapies

End of March 2023 (Preliminary date), Freiburg, Germany

The workshop will deliver expert knowledge on the following aspects of EB: clinical and genetic basis, wound and interdisciplinary management, how to design and conduct clinical trials, gene therapy, and models used in translational research.

More information here


EURORDIS Open Academy Schools 2024 – Applications are open!

June 3rd-7th, 2024 in Barcelona, Spain

Eurordis organizes its 2024 edition of the Open Academy Schools in-person on 3-7 June in Barcelona.

The programme will include off-site visits to research facilities/hospitals, lots of contact time with faculty and EURORDIS staff and the chance to network with fellow patient advocates and researchers, supporting each other in learning and practice during the training and beyond.

Apply before October 27th for an immersive week of learning.

More information here


GRIDD Study – Global Research on the Impact of Dermatological Diseases

From June 5th until September 28th

GlobalSkin in collaboration with Cardiff University (UK) and University Medical Centre Hamburg-Eppendorf (Germany) launches the Global Research on the Impact of Dermatological Diseases (GRIDD) Study.

The mission is to generate comprehensive global data about the impact of dermatological conditions affecting skin, hair, nails, and mucosa.

Take the survey by clicking here

For more information click here


Take part in the Patient Partnership Framework Survey

Deadline: 25th June

EURORDIS invites you to take part in a survey to help develop a Patient Partnership Framework for the ERNs. The survey will take approximately 10 minutes to complete.

You may access the online survey here.

The aim of the Patient Partnership Framework is to formalise a guiding structure for all patient-clinician cooperation. For more information, please click here.


EJP-RD advanced course: “Replicated N-of-1 Randomized Controlled Trials for Rare Diseases”

June 30th, at 4-6:30 pm CET

Fifth EJP-RD advanced course titled “Replicated N-of-1 Randomized Controlled Trials for Rare Diseases” held by Professor Patrick Onghena.

Panelists for the subsequent one-hour panel discussion:

  • Dr. Alex Sverdlov, Novartis
  • Prof. Dr. Matthieu Roustit, Université Grenoble Alpes, France
  • Prof. Dr. Stephen Senn, retired
  • Dr. Virginie Hivert, EURORDIS

Please note that preregistration is mandatory to secure your spot. Additional details, including how to register: EJP RD website.

Recordings of the previous EJP-RD webinars:

Webinar #1 “Does Randomization matter in clinical trials?” – presented by Prof. Dr. Ralf-Dieter Hilgers

Webinar #2 “Composite endpoints including patient relevant endpoints (Quality of Life)” – presented by Dr. Johan Verbeeck

Webinar #3 “The Statistical Evaluation of Surrogate Endpoints in Clinical Trials” – presented by Prof. Dr. Geert Molenberghs

Webinar #4 “Statistical and operational challenges with master protocols” – presented by Prof. Dr. Franz König


EJP-RD Variant Prioritization and Enrichment for Rare Diseases Workshop

September 20th-22nd, in Amsterdam UMC, Istanbul, Turkey

EJP-RD will organize a workshop on Variant Prioritization and Enrichment for Rare Diseases from September, 20th to 22nd 2023.

A three-day immersive event in which participants will learn the fundamentals of Whole Exome Sequencing (WES) including terminology, pre and post-alignment processing, variant calling using Genome Analysis Toolkit (GATK) pipeline and annotation/filtration/interpretation of the variants, and more!

Registration is open here until September 9th, 2023

More information, here


ERICA Webinar: REMEDI4ALL / drug repurposing and clinical trial readiness by Anton Ussi

October 2nd, from 13:00 to 14:00 CEST

This ERICA webinar will discuss challenges associated with getting ready for and conducting clinical trials in drug repurposing, with a focus on differences between trial requirements for future on-label or off-label use.

The discussion will also highlight key services and tools available to the community, as well as the REMEDi4ALL projects support offering.

Registration and more information, here


EJP RD – Free online course: MOOC – “Diagnosing Rare Diseases: From The Clinic to Research and Back”

Launched on October 16th, 2023 and available until December 8th, 2023 – Online

The new facilitation window for the MOOC Diagnosing Rare Diseases: From The Clinic to Research and Back has been launched on October 16th, 2023. This update will be available until December 8th, 2023.

For more information click here


EJP RD – Free online course: MOOC From Lab to Clinic: Translational Research for Rare Diseases

Launched on October 16th, 2023 and available until December 2nd, 2023 – Online

The French Foundation for Rare Diseases is delighted to announce the upcoming opening of a new facilitation window of the MOOC From Lab to Clinic: Translational Research for Rare Diseases on October 9th. This update will be available until December 2nd 2023.

With expert guidance, explore drug discovery, clinical trials, regulatory approval, and challenges in this unique field. Gain insights from patients and experts, understand trial planning, design, and data sharing. By the end, you’ll have a comprehensive understanding of how evidence is built for safe and effective treatments.

More information, here


EJP RD Virtual Platform: unleashing the Power of FAIR Resources for Rare Disease Research

EJP RD has produced their new EJP RD Virtual Platform (VP) for the research community. The go-to hub is dedicated for Findable, Accessible, Interoperable, and Reusable (FAIR) resources.

It includes catalogues of resources, registries, biobanks, knowledge bases and tools compliant with agreed standards.

For more information explore the VP Portal now by, clicking here


ERICA – WP5 Educational Webinar 3: “Bridging the gap between promising preclinical data and a successful clinical trial”

October 19th, 2023 – From 16:00 to 17:00 CET

ERICA is organizing a 3rd education webinar on “Bridging the gap between promising preclinical data and a successful clinical trial” on October 19th, 2023 at 16:00 CET.

This webinar focuses on the importance of translational research referred to “bench-to-bedside” by showcasing two successful models for bridging the gap between preclinical and clinical research.

For more information and for registration, click here


CMTC-OVM – 2023 Members conference

October 28th-29th, 2023 in the Netherlands and online

CMTC-OVM will organize their annual worldwide member’s conference in the Netherlands, on October 28th-29th, 2023. This year they will organize a ‘Hybrid’ conference again. This means that members can choose to participate Online/Virtual or be present In-Person at their location in the Netherlands.

For more information about the program and for registration, click here


ERICA & EJP-RD Joint Conference

November 21st, in Amsterdam UMC, Amsterdam, NL

ERICA and EJP-RD will organize their joint conference on November, 21st 2023. There will also be a pre-conference dinner on Monday 20th November.

During this meeting the will provide a close overview of all the relevant activities and joint efforts in the field of Rare Disease Research during the lifetime of EJP RD and ERICA with a further focus on the future RD Partnership & ERNs Research activities.

Registration and more information, here


EJP RD workshop: Managing RD biological sample data in Biobanks

December 13th-14th Milan, Italy

EJP RD is organizing a 2 day immersive workshop on Managing RD biological sample data in Biobanks. This training workshop is the conclusive event of a series of capacity building programs on biobanking put forth by the European Joint Programme on Rare Diseases.

It is aimed at biomedical researchers, medical professionals, and biobank managers who want to learn about the path to follow for exploiting the high value of the biological sample repositories in the RD research. The role of ERNs samples and how to optimise them for networking/ research networks is a basis for the development of the present course.

Registration and more information, here

21th caribbean dermatology symposium

19-25 January 2022

Virtual


24th Annual Meeting European Dermatologie Forum

21-25 Januray 2022

Montreux, Switzerland


11th Conference of the European Hidradenitis Suppurativa Foundation (EHSF)

5-12 February 2022

Virtual


Journées Atlantiques de Dermatologie Pédiatrique

24 – 25 February 2022 – 16:00-17:00 CET

Nantes, France


17th EADV Symposium

12 – 14 May 2022

Ljubljana, Slovenia


21th ESPD Annual Meeting

20-22 May 2022

Munich, Germany


World Congress on Rare Skin Diseases

7-9 June, 2022

Paris, France


11th European Conference on Rare Diseases and Orphan Products

17 – 18 juin 2022

Nice, France


SPIN 2022 – Skin Inflammation & Psoriasis International Network

6-8 July 2022

Paris, France


31st EADV Congress

07-11 September 2022

Milan, Italy


6th Cutis Laxa Days

14 – 16 September 2022

Ghent, Belgium


51st Annual ESDR Meeting

28 September – 1 October 2022

Amsterdam, The Netherlands


International Scientific Conference on Albinism, ISCA 2022

16 – 19 November 2022

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. It builds on the momentum created by the EDA (European Days of Albinism) conference series, which has been held every two years since 2012.

Registration and Call for Abstracts are now open on the ISCA2022 website: http://isca2022.albinismalliance.org

Please note that the deadline for abstract submission is October 6th, 2022.

Virtual


ERICA WP5 Educational Webinar : “Practical guide on how to use the Catalogue of services and the IMT”

Monday 24 October 2022 – from 13:00 – 14:00 CET

Invitations for all Researchers and Clinicians from all ERNs.

In this webinar, Anton Ussi (Operations & Finance Director at EATRIS), together with Agustin Arasanz Duque (Senior Innovation Manager at EATRIS), will provide practical guidance for using two important tools for RD researchers, developed within EU-funded projects: ERICA and EJP RD. This webinar is part of the Educational Webinar Series from ERICA’s WP5 Translation and Innovation. It builds on the introductory webinar Current research services available for the rare diseases community” that was organized in November 2021.

Webinar will be interactive with expected audience involvement. Attendees are invited to visit both resources prior to webinar attendance and use the opportunity for live tutorial and discussion.

The Catalogue of Services contains a wide range of preclinical, clinical, regulatory and development services provided by the European infrastructures ranging from samples, data & databases, technologies & facilities, models & tools to expertise & advice.

The Innovation Management Toolbox (IMT) is a free-to-use and curated reference library of resources in rare disease translational medicine that will provide investigators with self-help resources specific to their needs.

Additional info, registration and updates at ERICA website

Please submit any questions to ERICA WP5 project team erica@ccri.at or ERICA coordinating office


RE(ACT) Congress and IRDiRC Conference

13-15 January 2021

Virtual


Boosting the development of rare disease therapies: the IRDiRC Orphan Drug Development Guidebook

21-22 January 2021

Virtual


24th Annual Meeting European Dermatologie Forum

21-23 Januray 2021

Lucerne, Switzerland


Implementation of EUPID by ERN Registries

02 February 2021 – 16:00-17:00 CET

Virtual


10th Conference of the European Hidradenitis Suppurativa Foundation (EHSF)

11-12 February 2021

Virtual


11th Meeting on Rare Diseases

27 February 2021

Dessau, Germany


National Conference of Pediatric Dermatologie

19 March 2021

Brno, Czech Republic


20th International Vasculitis and ANCA Workshop

18-21 April 2021

Dublin, Ireland


G20 ADI-ADMG Dermatology International Congress

28-30 April 2021

Palermo, Italy


20th ESPD Annual Meeting

12-14 May 2021

Virtual


Symposium on “Connective Tissue, Immune System & Rare Ehlers Danlos Syndromes”

28-29 May 2021

Virtual


Le malattie rare in dermatologia pediatrica – 16e Giornate

4-5 June 2021

Rome, Italy


EMBO Workshop

14-16 June 2021

Barcelona, Spain


Grand Rounds on Atopic Dermatitis

3 July 2021

Virtual


Annual Meeting of Bristish Association of Dermatologists

6-8 July 2021

Virtual


EJP RD Advisory Committee for Therapeutics (ACT) workshop (ERN-focused event)

7-8 July 2021

Virtual


19th International Conference on Behçet’s Disease

8-10 July 2021

Athens, Greece


21st European Dermatology Congress

12-13 July 2021

Virtual


Skin care, Dermatology and Allergic Diseases

6-7 September 2021

Prague, Czech Republic


Debra International Congress 2021

16-19 September 2021

Virtual


EJP RD Resource Webinar: European Genome-Phenome Archive (EGA)

20 September 2021

Virtual


International Conference on Orphan Drugs and Rare Diseases

20-21 September 2021

Virtual


14th World Congress of Paediatric Dermatology 2021

22-25 September 2021

Edinburgh, UK


50th Anniversary ESDR Annual Meeting

22-25 September 2021

Virtual


EJP RD International Summer School on Rare Disease Registries and FAIRification of Data

27 September – 1 October 2021

Virtual


30th EADV Congress

29 September – 2 October 2021

Virtual


EJP RD Clinical Research with databases: The Basics & Beyond Workshop in clinical epidemiological research for ERNs

30 September – 1 October 2021

Leiden, The Netherlands


Euvas Vasculitis Course

30 September – 02 October 2021

Firenze, Italy


5th World Dermatology Congress

21-22 October 2021

London, UK


Epidermolysis bullosa course 2021

11-12 November 2021

Virtual


Second international Netherton Congress

18-19 November 2021

Virtual


JDP – Journées Dermatologiques de Paris

30 November – 4 December 2021

Paris, France


International Conference on Rare Diseases and Orphan Drugs

27-28 December 2021

Virtual