Scleroderma Patient-centered Intervention Network (SPIN)
SPIN’s goal is to develop, adapt and test new and existing programs to help people with scleroderma cope with their illness and manage their daily lives. SPIN toolkits are online self-guided programs designed to help people with scleroderma cope with everyday problems. www.spinsclero.com/en/toolkits
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 Association of New South Wales
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.
Scleroderma Association of Qld Inc. (Scleroderma Queensland Australia)
Navigating this site was easy.
The main question “What is Scleroderma ?” is most informative, well written and covers a lot more.
Scleroderma Australia
www.sclerodermaaustralia.com.au/
Scleroderma & Raynaud’s 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.
Scleroderma Society (UK)
This is UK-based and has been supporting people with Scleroderma for more than 25 years.
Scleroderma Foundation (US based)
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:
scleroderma.org/resources-center
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.
International Scleroderma Network
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:
New Zealand Rheumatology Association
The New Zealand Rheumatology Association (NZRA) is the organisation that represents the rheumatologists of New Zealand.
Specialist Rheumatology Clinic
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
The Australian Rheumatology Association’s site: a good resource for Rheumatology links, backgrounders and services
Autoimmune New Zealand
Natalie Willis’ information site for those with autoimmune disease. Links to research and support network.
New Zealand Organisation for Rare Disorders
NZORD, the New Zealand Organisation for Rare Disorders, aims to provide New Zealand’s central starting point for information about rare diseases
Sjögren’s Support group
A New Zealand support group. Contact Sandra Forsyth Ph 021024765595
EUSTAR The Eular Scleroderma Trials and Research group
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
The Ministry of Business, Innovation and Employment (MBIE) had a page in the Workable – Employers and disabled workers information hub section on understanding the characteristics of a disability and the abilities of an employee, and help with the inclusion of affected workers in a workplace. It had a link to an Australian Government JobAccess site on scleroderma. This page can be found on archive.org Scleroderma | JobAccess (archive.org)
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.