Stream the opening session from EULAR PARE in Zagreb LIVE

‘Healthy Ageing with a rheumatic or musculoskeletal disease (RMD)’ – 17th EULAR ANNUAL EUROPEAN CONFERENCE OF PARE

Watch the Opening session on 7 November 9 – 11.20am CET

View it on YouTube (in html 5 Format) : http://youtu.be/MRK9DJt586E

Glossary of Scleroderma Terms

Often we catch a word related to scleroderma which we do not understand and makes it even more difficult to explain to family and friends.

What does CREST, Capillaries, Esophagus, Dilate, Malabsorption, Pulmonary fibrosis and Telangiectasia mean?

Check Out Scleroderma Foundation’s “Glossary of Scleroderma Terms”. You might find a word or two you have been wondering about.

 

Edgar Stene Prize 2015

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.

At the Opening Plenary Session of the forthcoming European Congress of Rheumatology in Rome, Italy, on 10 June 2015, the Edgar Stene Prize will be awarded to the winning essay on the topic

“Taking control of my life: working together with health professionals to achieve my personal goals”

EULAR invite people with rheumatic and musculoskeletal diseases (RMDs) to write about their personal experiences and the role that health professionals have played in supporting them to live as independently as possible, achieve important personal goals, and to take control of their lives. What have you been able to achieve and how? Each small step counts and we look forward to hearing many inspirational stories. In this context, health professionals may include your nurse, your primary care doctor, your rheumatologist and other specialists, your physiotherapist, your psychologist – in brief any of the health care team around you. What could be improved in your country and if you have access to all the health professionals you need. What should an ideal relationship between health professionals and people with RMDs look like?

As in the past, EULAR encourage their national EULAR member organisations of PARE to organise national competitions for people with a rheumatic or musculoskeletal disease (minimum 16 years of age). Competitors should be invited to submit an essay not exceeding 2 pages (A4) in their own language to their national EULAR member organisation by 31 December 2014.

Please find the rules on this link.

Please note

Interested individuals should get in touch with their national EULAR member organisation of PARE – listed on www.eular.org – and ask them if they are organising the Stene Prize Competition in their country.

The best entry from each country will be submitted for the final decision made by the jury elected by the PARE Standing Committee.

Upcoming congress in Belgium

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On October 18th, the “A.P.S.B. Association des patients sclerodermiques de Belgique” organise the 6 th FRANCO-BELGE of scleroderma on 2014, October 18th in “La Halle aux Draps” Tournai Belgium.

The morning, 3 specialists of scleroderma will speak about the illness.

Patients, family, medical and paramedical staff will learn more about recent medical discoveries.

 

Please go to the calendar to find the programme.

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

PaulKlee_WieBlumenimGlas1933_250

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.