Welcome to the 6th Systemic Sclerosis World E-Congress 2020 – Patient Congress
Latest update: 11 July, 2020
Dear Participant,
Unfortunately, due the COVID-19 pandemic, we were forced to first postpone and then completely cancel the World Congress in Prague in 2020. Along with the steering committee, we came to the conclusion that due to the uncertainty of the virus progression and the high possibility of a second wave of the virus outbreak that we should explore a virtual solution of the 6th Systemic Sclerosis World Congress.
We have worked very hard to make this happen and we are very pleased to offer you a virtual congress experience. We have recorded the congress and you will have access to the presentations from 12 July to 20 December once you have registered. Registration is free. You can view as many sessions as you like.
Finally, we are happy to inform you that the 7th edition of the congress in 2022 will be in Prague. Official dates will be announced soon.
Best regards,
Sue Farrington, President
FESCA – Federation of European Scleroderma Associations aisbl.
| SESSION | SPEAKER |
| Welcome | |
| Fesca Welcome | Sue Farrington (UK) |
| What is new since 2018 and what can we expect for the next 2 years? | Yannick Allanore (FR) |
| What newly diagnosed patients must know | |
| Just diagnosed with scleroderma – Now what? | Maureen Mayes (US) |
| New treatments, research and expectations | |
| What are we learning from research? | Chris Denton (UK) |
| What patients should know about participation in clinical trials | Joep Welling (NL) |
| The Hands in Scleroderma | |
| Digital ulcers & how best to treat them | Professor Marco Matucci Cernici (IT) |
| Calcinosis | Ariane Herrick (UK) |
| How to keep hands mobile | Linda Kwakkenbos (NL) |
| The Skin in Scleroderma | |
| Localised scleroderma | Pia Moinzadeh (DE) |
| How systemic sclerosis affects the skin | Pia Moinzadeh (DE) |
| Self Management | |
| How to deal with fatigue | Eric Hachulla (FR) |
| GI Tract | |
| Understanding the GI tract and gut problems | Anna Maria Hoffmann-Vold (NO) |
| Truths and lies on diets. How to maintain your weight | Elizabeth Volkmann (US) |
| Families with Children with SSc. How to cope | |
| Paediatric Scleroderma | Ivan Foeldvari (HU) |
| Parents’ experience | Silvia Sandalescu (RO) |
| Transplants | |
| Who could benefit from a transplant? | Jaap van Laar (NL) |
| Reducing toxicity in transplants | Alan Tyndall (CD) |
| Patient experience | Michael Oeschger (DE) |
| Patient experience | Stephanie Stephanie Munoz (NO) |
| Lungs and Heart | |
| PAH-the heart in SSc | Carina Mihai (CH) |
| Patient experience, lungs | Edith Brown (UK) |
| Ask the Professor | |
| In Italian | Professor Marco Matucci Cernici (IT) |
| In German | Ulf Muller-Laedner (DE) |
| In Hungarian | Laszlo Czirjak (HU) |
| In French | Yannick Allanore (FR) |
| in Spanish | Patricia Carreira (ES) |
| Closing comments | |
| Wrap Up – What does the future hold | Professor Alan Tyndall (CH) |
Where and how do I register?
You register at patientcongress2020.livebit.it – the platform will be available starting from July 12.
Simply fill out your personal data in the formular (name, surname, email address, password, country). Then you have access. TIP: We recommend you to write down the password for future use.
I have forgotten the password - how do I get a new one.
Send an email to the technician at support.livebit@tcgroup.it, with following message in the subject line: Support for https://patientcongress.livebit.it
You can also find the email via the REGISTER bottom on the congress page.
Why do I have to register since it is free to use?
Registrations helps us to know which and how many participants will use the platform.
Once registered you can visit the platform as many times you like between 12. July and 20. December.
What is the price?
For patients the patient e-congress is free.
Do I need to download a specific programme to view the patient e-congress?
No, you view the content in your browser.
Following browsers are compatible for viewing: Google Chrome, Apple Safari, Mozilla Firefox, Microsoft Edge.
Can I pick and choose which sessions to listen to, or do I have to listen all the way through?
You can select the sessions you are interested in from the contents list at the beginning.
How many times can I view the e-congress?
As many times as you want between 12. July and 20. December.
