Links

Scleroderma Victoria

www.sclerodermavictoria.com.au/

A nicer, brighter and colourful home page. Easy to read and Navigate around their pages.

The main question “What is Scleroderma? ” is short and brief. Clear and easy to understand, but does not go into to much detail. Covers all the basics of the disease. Navigation is easy, and their events page is clearly laid out.

Scleroderma Society

www.sclerodermasociety.co.uk

This is UK-based and has been supporting people with Scleroderma for more than 25 years.

Nice home page with clear logo. Navigation is easy.

Note: Their newsletter is available at :
www.sclerodermasociety.co.uk/newsite/newsletter.php

They also have a useful links page:
www.sclerodermasociety.co.uk/newsite/links.php

Scleroderma Foundation (US based)

www.scleroderma.org/

Nice home page with clear logo. Navigation is easy.

Note: News and Events contain their Newsletter, stored chronologically.

The main question “What is Scleroderma ?” is a very short description with few details. Free brochure download:
www.scleroderma.org/medical/download.shtm
which has all useful information about various forms of Scleroderma.

Journal of Scleroderma and Related Disorders (JSRD)

http://sclerodermajournal.com/

An international, multi-disciplinary, peer-reviewed publication aimed at scientists and clinicians interested in systemic sclerosis, scleroderma, and other related autoimmune and fibrotic diseases. The journal publishes high quality, original research articles on the epidemiology, natural history, pathophysiology, diagnosis, treatment and outcome of these diseases. It also carries editorial and commentary. It is the official journal of the World Scleroderma Foundation and the European Scleroderma Trials and Research Group.

Raynaud’s & Scleroderma Association (UK)

www.raynauds.org.uk/

Nice clear and easy to read home page.

They have given a brief description of Raynauds and Scleroderma as part of their home page.

Free, downloadable brochures.

International Scleroderma Network

www.sclero.org/

This site links to Scleroderma websites in all the countries, including New Zealand, which has the Auckland Scleroderma Support group.

This site also runs forums:

www.sclero.org/forums/

Scleroderma Waikato

PH 027 548 1214 or 07 8535434
Email organiser

Scleroderma Association of New South Wales

www.sclerodermansw.org/

Their Home page has a lot of information and I found I had to read carefully to find the links to their other pages. “What is Scleroderma?” is pretty informative and easy to read. It explains in everyday language, and drops the jargon.

New Zealand Rheumatology Association

www.rheumatology.org.nz/

The New Zealand Rheumatology Association (NZRA) is the organisation that represents the rheumatologists of New Zealand.

Specialist Rheumatology Clinic

QE Health Rotorua

Dr John Petrie provides services for QE Health in Rotorua and Taupo. Used by some of our members who report it helpful.

Australian Rheumatology Association

www.rheumatology.org.au/

The Australian Rheumatology Association’s site: a good resource for Rheumatology links, backgrounders and services

 

Autoimmune Resource and Research Centre

www.autoimmune.org.nz

Natalie Willis’ information site for those with autoimmune disease. Links to research and support network.

www.autoimmune.org.au

The Autoimmune Resource & Research Centre, based in New South Wales, has informative content and comprehensive newsletters.

Scleroderma Association of Qld Inc. (Scleroderma Queensland Australia)

www.scleroderma.org.au/

Navigating this site was easy.

The main question “What is Scleroderma ?” is most informative, well written and covers a lot more.

New Zealand Organisation for Rare Disorders

www.nzord.org.nz/

NZORD, the New Zealand Organisation for Rare Disorders, aims to provide New Zealand’s central starting point for information about rare diseases

Sjögren’s Syndrome Society of New Zealand

www.sjogrensnewzealand.co.nz

A New Zealand organisation formed to give support and information to people suffering from Sjögren’s Syndrome

Sjögren’s Support group

sjogrens.sandra@gmail.com

A New Zealand support group. Contact Sandra Forsyth Ph 021024765595

Pulmonary Fibrosis Support Group

www.pulmonaryfibrosis.org.nz

The PF Support Group provides a sympathetic environment for supporting people and their families/carers throughout the course of their disease.

New Zealand Pulmonary Arterial Hypertension Trust and Support Group

www.nzpah.org.nz

NZPAH Trust and Support Group supports, educates and promotes awareness of PAH

Mesothelioma Prognosis Network

www.mesotheliomaprognosis.com

Mesothelioma is a rare cancer that affects protective membranes surrounding lungs, heart and abdominal cavity mainly caused by asbestos exposure. Its Public Outreach Department tries to inform one new person each day about the disease. It has created extensive support and information online

EUSTAR The Eular Scleroderma Trials and Research group

www.eustar.org

Eustar, formed in Italy in 2002, aims to foster awareness, understanding of and research into Scleroderma and its management throughout Europe and other countries.

We have several centres here in New Zealand that are members, they are Dunedin, Hamilton and Christchurch. Taranaki is an affiliate.

EUSTAR Aims

The main purposes of the EUSTAR group, as they were defined in Florence, are to foster the study and the care of scleroderma and to achieve a consensus on evidence based standards for the management of scleroderma patients throughout Europe. In order to achieve this EUSTAR aims to:

  • Foster co-operation between different countries and geographical European areas;
  • Encourage and assist the foundation of national organizations;
  • Promote educational programs;
  • Sponsor or organize international congresses on scleroderma;
  • Supervise the scientific activities of all meetings organized with the EUSTAR patronage;
  • Encourage the publication of scientific proceedings of such meetings;
  • Stimulate scientific research on scleroderma;
  • Establish contacts with all other specialties interested in scleroderma: dermatology, cardiology, respiratory medicine, radiology, vascular medicine, internal medicine, etc.
  • Encourage cooperation with other scientific associations in other continents and with patient organizations in Europe and worldwide.

Workplace advice

Ministry of Business, Innovation and Employment (MBIE)

Job access, Australia

The Ministry of Business, Innovation and Employment (MBIE) in New Zealand has a page in the Workable section on “Understanding the characteristics of a disability can be important to understanding the abilities of an employee, and help with the inclusion of affected workers in a workplace.”

In Australia, on an Australian Government JobAccess site, there are suggestions for workplace adjustments.

Mayo Clinic

Slide show: Hand exercises for people with arthritis

The Mayo Clinic shows people with arthritis how to exercise and stretch their hands, in a series of slides.