Irish Raynaud's & Scleroderma Society

Information for scleroderma patients

Buying Aids

Heating aids, books and DVDs on scleroderma and other items are available in the Products section and these can be bought online.  To order by post send a list of the items needed, with a cheque or postal order for the correct amount (Euro only please) made out to the Irish Raynaud’s and Scleroderma Society, and post it to P.O. Box 2958, Foxrock, Dublin 18.  Your order will be processed as quickly as possible.

Rare Disease BLog - International Opinion On Rare Diseases and Orphan Drugs

A new tool has joined the arsenal of instruments geared toward raising awareness and discussing the issues pertinent to rare diseases and treatments. Rare Disease Blogs is billed as offering “international opinion on rare diseases and orphan drugs” and is available to the rare disease community and anyone else interested in learning more about the complex issues facing rare disease patients and their caregivers. A transatlantic initiative created jointly by the European Organisation for Rare Disorders (Eurordis) and the USA’s National Organization for Rare Disorders (NORD), the new website has some stellar bloggers onboard - including researchers, policy makers, and patient organisation representatives.

The founders hope to increase the involvement of regulators, as well as EMEA patient representative bloggers, in order to enhance the direct exchange of information, experience and opinions within the rare disease community, involving all stakeholders at the international level. Readers are invited to comment on any of the articles, which are divided into two main categories: rare diseases and orphan drugs. Neatly designed and nicely illustrated, the Rare Disease Blogs offer one more way of staying abreast of news in the field”.

This is a new initiative.  It is certain those involved in the field of rare diseases will find this of interest. The new Rare Disease Blog http://www.rarediseaseblogs.net/

The Irish Raynaud’s and Scleroderma Society does not endorse any information found on the Rare Disease Blog.

World Scleroderma Congress

On 12th February 2010, the first World Scleroderma Congress was held in Florence, Italy. A dual event, it had both a one-day Patient Conference and a separate three-day conference for doctors and specialists, with lectures that suited each audience group. Patients who registered from around the world numbered 143, and over 1200 attended the conference overall. The conference for patients was run by the Federation of European Scleroderma Associations (FESCA), which also laid on a dinner for all patients to get together and exchange experiences, and a sightseeing trip the day after the congress for all those not attending the FESCA AGM.

Synopses of lectures

IRSS members can download here a synopsis of each of the talks given to patients by the nine speakers on the day. Please note that we accept no responsibility for the information and advice given, and the treatments mentioned are not necessarily supported by your own doctors. We include these synopses only in the interests of open communication of information. We are not doctors and you should consult your own doctor for advice. Please remember that what suits one person does not necessarily suit another, and that the practice of doctors may vary from one country to another.