The DeSScipher Project

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DeSScipher is the 1st international EC-funded research project, and currently also the largest project, on the rare disease systemic sclerosis (SSc).

DeSScipher aims to decipher the optimal management of systemic sclerosis. The goals of this project are to improve the treatment strategies for people with systemic sclerosis, and thus to help affected patients to get more quality of life.

The projects comprises five observational, non-interventional studies which started in April 2013 and have been designed to cover different evolution phases of the disease from early, functionally relevant manifestations such as digital ulcers and hand arthritis to later, more severe organ manifestations such as interstitial lung disease, pulmonary hypertension and severe heart disease.

Moreover, DeSScipher aims to improve the education of people with systemic sclerosis and physicians, and ultimately to achieve a better care for patients by the development of accepted evidence-based clinical guidelines.

Do you want to know more?

Please go to this page.
For newsletter, leaflets and poster, please visit the download page.
Go to the official page.

June 29 is World Scleroderma Day

TURNING TOWARDS THE SUN

Join us in turning towards the sun
like the sunflower does,
to celebrate World Scleroderma Day.

wie Blumen im Glas / As Flowers in a Glass Watercolour and pencil on plaster primed cardboard; original frame strips 54 x 46 cm Present location unknown

wie Blumen im Glas / As Flowers in a Glass
Watercolour and pencil on plaster primed cardboard; original frame strips
54 x 46 cm
Present location unknown

Download our poster for World Scleroderma Day 2014: . SSC Day poster_Klee Blumen_2014

Scleroderma is a rare disease of the immune system, blood vessels, and connective tissue. It is characterised by fibrosis of the skin and internal organs, and damage to the vascular system. The first symptom is generally Raynaud’s, a condition in which the fingers and toes turn white and numb in cold weather. Early diagnosis and treatment is critical to prevent the worst complications. The Federation of European Scleroderma Associations (FESCA) believes that people with scleroderma should have equal access to treatments and care.

The great Swiss artist Paul Klee died in 1940 of scleroderma, which strongly influenced his personal development and creative art.

Today many more optimistic developments exist for recovery.

To find events celebrating World Scleroderma Day, please contact your local patient association.

Link to members of FESCA can be found on our member page.

 

Scleroderma Day events in France

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Please find attached this post the full programme for Scleroderma Day in France.

To find out, what events there might be in your own country, please contact your local association.

Download the programme: 29 juin 2014 – 6eme Journée Mondiale

GILS stands up the first Scleroderma Units in Italy

Board and members of GILS, Italy, in agreement with the scientific committee, with some hospitals and Institutions will get some Scleroderma Units off the ground.

This Units, already working in UK and USA, offer a skill network to patients in need of diagnosis and therapeutic knowledge, within just one Centre highly specialized and able to make a team Unit.

Read the press release GILS stands up the first Scleroderma Units in Italy

Visit GILS at www.sclerodermia.net

New therapies – AIMSPRO

The Food and Drug Administration has at the end of February 2014 granted Orphan Drug designation to the therapy AIMSPRO, for systemic sclerosis. Widely known by the acronym FDA, the organisation has a wide-ranging effect on decisions made regarding drugs elsewhere in the world.

A double-blind, placebo-controlled Phase II clinical study evaluating the safety and tolerability of AIMSPRO given as a monotherapy to patients with Late Stage Established Diffuse Cutaneous Systemic Sclerosis (dSSc) is now wholly complete. The encouraging results from this study were published in Annals of Rheumatic Diseases.

The detailed announcement of the Orphan Drug designation is on Daval’s website : http://www.davalinternational.com/news/news_17.html

 

 

Edgar Stene Prize 2014

Every year EULAR and the Standing Committee of PARE offer the Edgar Stene Prize for the best essay on a previously determined topic. The Stene Prize is EUR 2’000 and includes travel to the Annual EULAR Congress of that year with hotel accommodation for up to four nights as well as an invitation to attend the Opening Plenary Session and the Congress Dinner at the EULAR congress.

This year’s topic was “Vision 2043 – my ideal world for people with a rheumatic or musculoskeletal disease” and was won by Marinka Stein Due Sørensen from Denmark.

You can read her essay “Dancing down the road of life”  here.

Read more about the Edgar Stene Prize here, and you can also read essays from previous years.

 

 

PROMIS – Quality of life survey

Vivek Nagaraja, MD and Dinesh Khanna, MD, MSc at the University of Michigan Health System, are conducting a piece of research called PROMIS (Patient Reported Outcomes Measurement Information System) in rheumatology.

The research involves an online survey catered to patients with various rheumatologic conditions.

Interested patients are highly encouraged to take this survey as it provides important information about the burden of their rheumatologic condition on different aspects of life.This survey is completely voluntary and confidential.

Click here to go to the survey: www.bitly.com/UMpromis 

For further instruction, please read this instruction guide.

PROMIS Letter and email fomat to patients copy

 

3rd systemic sclerosis world congress in Rome – the patient congress

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The 3rd systemic sclerosis world congress was held in Rome, on February 6-8, 2014.

Congress Venue 

Ergife Palace Hotel & Conference Center
Via Aurelia 619 – 00165 Rome, Italy

Message from the president, Ann Tyrrell Kennedy

The Third World Systemic Sclerosis Congress was held in Rome from 6-8 February 2014, and an audience with the Pope preceded it for people with scleroderma. This was a moving and momentous beginning to an extremely informative event.

(more…)

Pope Francis lays hands in blessing on FESCA Scleroderma Patients at audience in Rome

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“It was an incredible joy for me,” said Maria Alice Correia, of Switzerland, of her visit to see the Pope. Having had a lung transplant to reverse some of the damage caused by scleroderma, she wanted to give thanks. Others wanted to pray for healing. Some 50 patients attending the Federation of European Scleroderma Association aisbl (FESCA) World Scleroderma Congress, held in Rome on February 6-8, were taken to an audience with Pope Francis before the congress began. They were given special seating next to the papal dias, and Pope Francis came over to lay his hands in blessing on the heads of those sitting at the front of the group.

Even those not able to feel his touch or take the Holy Father’s hand were visibly moved. Tears mingled with the rain that fell in the Vatican. “As we arrived, we heard over the loudspeaker words of welcome for patients with scleroderma. It felt incredible that they were saying the name of my disease, that nobody knows, out loud in the Vatican,” said Marjo Makela of Finland.

Pope Francis had read the literature sent to him by FESCA aisbl about scleroderma, and he prayed for those who have the severe, rare and progressive disease, sending the following message to be read out at the Opening Ceremonies of the World Scleroderma Congress:

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“His Holiness Pope Francis sends cordial greetings and good wishes to all taking part in the Third Systemic Sclerosis World Congress in Rome these days. He trusts that this exchange of experiences, research and future outlooks will prove fruitful for combating this devastating disease and providing effective care and support to patients and their families. Conscious of the generosity and dedication with which so many health care professionals throughout the world daily place their skills at the service of our brothers and sisters in need, he prays that, in confronting the mystery of human suffering, they will always find the strength to bring hope amid the contradictions of this world. Upon the participants in the World Congress, their colleagues, patients and families, the Holy Father invokes the Lord’s Blessings of joy and peace.”

As they looked down from the dias over St Peter’s Square, the FESCA aisbl group felt privileged beyond their expectations to have been close enough to this great pope to see his smile and feel his charisma, and to experience personally the strength of his blessing.

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Rare Disease Day 2014

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Rare Disease Day is held the last day of February each year and is the occasion to raise awareness for rare diseases. The day is coordinated by EURORDIS.

On and around this day hundreds of patient organisations from more than 70 countries and regions worldwide are planning awareness-raising activities around the slogan “Join Together for Better Care”.

Please go to Rare Disease Day website to learn about the events taking place round the world. Lets join together for better care.

You can also find information on facebook and twitter.