It is not easy to take stock of the situation concerning research on various diseases deemed as rare and on systemic scleroderma in particular.
Besides, the use of the term “rare” for a disease that only in Italy affects over fifty thousand people can only apply in statistical terms; on the other hand, as far as the pathology itself is concerned and above all from the patients’ point of view, this is basically a systemic and progressive disease, with all the physical and psychological implications of disabling pathological forms.
In Italy, research follows two main courses: the official one, which depends on public funding and which has preset routes, especially within the university field, and the one supported by pharmaceutical industries and carried out by both the industries themselves and by public and private Research Centres.
Each of these research courses offers advantages and limitations of its own, and, because of such limitations, a number of non-profit Foundations and Associations have been set up and have subsequently spread: these are often created by groups of patients or by people whose relatives have been personally touched by the various diseases, who, in view of the fact that official research is forced to follow set courses depending on the number of people affected rather than on the seriousness of the pathology, attempt to promote targeted research work focusing on the individual diseases labelled as rare.
This is what led to the creation of Associations aimed at fighting tumours, AIDS, multiple sclerosis, hepatitis, and recently also to the establishment of an Association for the Fight against Scleroderma, set up in Ancona (AILS), which is developing branches also in other Italian provinces (Milan, Palermo, Verona, Caltanissetta).
Howeevr, this is not the only one: there are other Associations for scleroderma patients in Italy, which are located in Emilia Romagna and Friuli. Nevertheless, in all the countries of the world there are Foundations and Associations attempting to face the systemic scleroderma problem and doing their best to get patients, families and health workers to know each other, as you can easily infer from a USA research conducted by the S.D. Round the World, listing the internet websites devoted to this specific pathology in the rest of the world.
Translated by Interpres sas
Parlez-vous
français?
Come circa italiano?
Oder, möglicherweise Deutscher?
Because of the truly international nature of the internet, we want to also
offer links to non-American web pages. We would also like to give a "tip of
the hat" to Shelley Ensz' Scleroderma
A to Z . Shelley's wonderful site has informative scleroderma web
pages in 14 languages. Some of those links are below. Check it out! If you
know of an informative autoimmune web site that we can list here, please let
us know at thegoils@sdworld.org.
Scleroderma Association of Queensland
Alison Hunter Memorial Foundation for research
into Myalgic Encephalopathy/Chronic Fatigue Syndrome.
M.E./Chronic Fatigue Syndrome Society of Victoria Inc.
is a non-profit charitable organisation dedicated to serving the Chronic Fatigue
Syndrome Community in Victoria and Tasmania.
OzME is a mailing list for people with CFS/CFIDS/ME, FMS,
MPS, or any other related illness like MCS.
Scleroderma/Lupus Support Society, Inc., Newcastle,
New South Wales
LungNet - The Australian Lung Foundation's Guide to Lung
Health & Respiratory Medicine
The Scleroderma Foundation of Victoria, a self-help group
for Scleroderma sufferers
Canadian Scleroderma and Support Groups
Ce site a pour objectif de vous faire connaître ce qu'est la
Société de Sclérose Systémique (Sclérodermie) du Québec inc. et, ce
qui se fait pour venir en aide aux personnes qui en sont atteintes.
Canadian_FM-ME_SIG@maelstrom.stjohns.edu -- a SIG (Support and
Information Group) for the diseases fibromyalgia and CFS/M.E. For further
information, write to the list administrators.
Scleroderma Society of Canada
Sklerodermie von A bis Z: Arten von Sklerodermie:
Linear - Ein Überblick über die verschiedenen Arten von Skerodermie, wie Morphea,
linear, begrenzt, verbreitet, CREST, Deckung und MCTD.
Diese Site soll über das Krankheitsbild "Chronisches
Erschöpfungssyndrom (CFS)" und den gesicherten medizinischen Wissenstand
informieren.
Die SCLERODERMA
LIGA e.V.
D-Penizillamin in der Behandlung von Sklerodermie
"en coup de sabre."
Raynaud-Phänomen und Sklerodermie
La Esclerodermia desde la "A"
hasta la "Z". Ayuda y Especialistas. Dificultades para el Diagnóstico.
Tipos de Esclerodermia.
El
Proyecto Co-Cure está trabajando en la traducción al español de información
básica sobre el síndrome de fatiga crónica y la fibromialgia.
Enfermedades Autoinmunes Sistémicas
Primaarinen biliaarinen kirroosi - yleistä
Au sujet de la Sclérodermie
Association des Sclérodermiques de France
Fatigue chronique Syndrome de
Fibromyalgies - Polyenthésopathie SPID
Raynaud maladie et Syndrome de
Site Orphanet: Base de données sur les maladies
rares et sur les médicaments orphelins.
Scleroderma from A to Z (in Hebrew)
Dina Davidoff's website in Hebrew. You must have a Hebrew
browser or Hebrew language support in your browser to read it properly.
Irish Raynauds & Scleroderma Society
Disability Federation of Ireland
Arthritis Foundation, Dublin
Conoscere la Sclerodermia
Sclerodermia dalla A alla Z
Storia: Gianna - Sclerodermia sistemica progressiva
della pella
Tentang Scleroderma
Penyakit Scleroderma
American Lung Association - Información En Español
Sclerodermie van A tot Z
Nederlandse mailinglist voor mensen met sclerodermie
en aanverwante aandoeningen om ervaringen uit te wisselen, elkaar te steunen
en tips te geven.
Sclerodermie: Door dr. M. Walravens, reumatoloog, Sclerodermie
Sjögren-syndroom: Door dr. M. Walravens, reumatoloog
MCTD (Mixed Connective Tissue Disease}: Door dr. M. Walravens,
reumatoloog
New Zealand Arthritis and Scleroderma Support Groups, SD A-Z
Aspectos atuais da terapêutica na esclerose sistêmica (esclerodermia)
Scleroderma de la A la Z
Povestea Mea: Krista
Despre Scleroderma
Raynaud's and Scleroderma Association
British Sjogren's Syndrome Association
Royal Free
Hospital, Rheumatology Unit, Systemic Sclerosis (SSc) or Scleroderma
Grupo de Apoyo Venezolano Contra la Esclerodermia
Grupo de Apoyo de Venezuela
Escleroderma de A a Z
Escleroderma de A a Z. O Escleroderma ou a Esclerodermia
é uma rara e crônica doença auto-imune.
