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!
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.
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/
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
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.
Please register via given button below:
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(After registering, you will receive a confirmation email containing information about joining the webinar)
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
ERN-Skin Workshop : Epidermolysis bullosa: from genes to translation into therapies
The workshop will deliverhttps://www.ejprarediseases.org/our-actions-and-services/training-and-education/ern-workshops/ 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.
End of March 2023 (Preliminary date)
Freiburg, Germany
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
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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
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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.
Registration is open!
Please register via given button below:
(After registering, you will receive a confirmation email containing information about joining the webinar)
REGISTER HERE |
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