Well, unless you had a month away from your internet connection, you will know that June was Scleroderma Awareness month, with World Scleroderma Day, highlighting at the end of the month on the 29th.
We are living and breathing this as our reality, 24hours a day, 7 days a week, and so, (for me at least, and I am sure that I can speak for every scleroderma patient on this), there is a huge urgency for an improvement in the current scleroderma patient landscape.
The awareness month and featured World Scleroderma Day can be optimised as a springboard in helping with this.
|Thanks to USA patient Sharon Esposito for this image|
At Scleroderma News, daily information posts about scleroderma and all that it entails were published, throughout June.
Thank You for the huge response to these posts and I am delighted that they were of interest.
My intention was to focus on the many current unmet needs of the scleroderma patient, in the hope for improved understanding and treatments to be made available.
DAY 6 EULAR classification
DAY 7 Raynaud's
DAY 17 Lungs
DAY 18 Skin
DAY 19 Calcinosis
DAY 20 Bone, joints, muscles = MSK
DAY 21 Gastro-intestinal upper
DAY 22 JSRD - Journal of Scleroderma and Related Disorders
DAY 25 Pain
DAY 26 Gastro-intestinal lower
DAY 27 Skin
DAY 28 Other symptoms
Scleroderma Singapore, Scleroderma Switzerland, Scleroderma Australia, Scleroderma Italy and Scleroderma India held similar events also.
Scleroderma Netherlands held a visual art exhibition at the European Parliament.
The purpose of this community is to bring together a global space for sharing of best practice for scleroderma and Raynaud's patients, using google translate for non English speaking patients.
Please register as a member (it is free), and contribute / share anything which you think is of interest.
The daily awareness posts published here on Scleroderma News can also be found under their relevant subject headings, on the community page, which is linked and twinned to my blog here at Scleroderma News.
The plans for next year have already begun!
For further 'engaging your community for fundraising' ideas from Findacure, Click here
An edited version of this article was published here, in my Column with Scleroderma News.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice