It is finally here!
Having counted down the days and months since the spring, TODAY is finally World Scleroderma Day.
To read my post ‘June is Scleroderma Awareness Month,’ click here.
To read my post about how the date for World Scleroderma Day was chosen, click here.
For the scleroderma patient, never has there been a more encouraging time in terms of progress than now. Better understanding of the biologic mechanisms involved in the disease process and availability of newer medicines with less toxic side effects, combined with treatment at dedicated, expert specialist centres, has improved the scleroderma patient experience.
Research is slowly showing a glimmer of light on the pathways involved in the fibrosis / fibrotic pathway, with more new chemical compounds gaining orphan drug status for future development, than ever before.
Scleroderma patients should also be encouraged by the launch of The Journal of Scleroderma and Related Disorders, as this is a medical journal specifically focused on research and advances in scleroderma. I featured the Journal on DAY 22 of Scleroderma Awareness Month.
Scleroderma patients should also be encouraged by the increasingly growing number in attendees at each bi-annual World Scleroderma Foundation Congress meeting. This year, the meeting was held in Lisbon, with a record attendance of 1,220 participants from 53 different countries. The next Congress is scheduled to take place in Bordeaux in 2018. To know more about the World Scleroderma Foundation, click WSF. To read my article on why global collaboration is so important, click here.
A few events in celebration of World Scleroderma Day 2016 have already taken place.
Scleroderma India held an education / information day on Saturday, as did Scleroderma Singapore, Scleroderma Netherlands, Scleroderma Australia and ABRAPES, our Brazilian scleroderma friends. ABRAPES are also holding an event today in Rio, as well.
Many Scleroderma Foundation walks took place all over the United States on Saturday. These walks, of course, being made more appealing by the glorious sunny weather, as opposed to refreshing, unpredictable British weather!
However, without a shadow of doubt, the Scleroderma Society of Canada have shown the rest of the world how to raise scleroderma awareness. They have lit up the CN Tower in blue and white for scleroderma awareness, held several patient walks in Toronto, and, on the evening of the 29th, Niagara Falls will be illuminated BLUE for scleroderma for 15 minutes. And for those of us who cannot make it in person, we can watch live on Facebook as the Falls will be broadcast LIVE at 10pm EST on the Scleroderma Society of Canada Facebook Page. The Canadians also made a stance at their law governing body, by way of taking along over 800 patient letters to the Minister of Health in Canada. The letters highlighted the current unmet patient needs in pulmonary arterial hypertension. To read more about this click here
Here in the UK, the Chair of the All Party Parliamentary Group, Ben Howlett MP, has advised me that he has scheduled to ask a question to the Department of Health in the Houses of Parliament on 5th July about World Scleroderma Day and investment to research commitments. Sadly, no lighting up Big Ben in blue and white, this year.
If I have missed your country’s efforts for World Scleroderma Day, please let me know in the comments section!
As you know, here at Scleroderma News we have run a very active campaign over the course of June scleorderma awareness month, with daily facts and information about the reality of living with a scleroderma diagnosis and an A to Z of all you need to know.
Due to the popularity and patient engagement shown during Scleroderma Awareness Month, a Raynaud’s and Scleroderma Awareness global patient community has been set up on Google for continued momentum and for global participation by way of Google Translate.
The purpose of this community is to provide global patient support, as well as to be a source of reference for anyone with an interest, or anyone who wants to know more about scleroderma and Raynaud’s. The community is open to everyone, and anyone can add information, which is encouraged, to ensure the true reality of living with this rare debilitating chronic condition is conveyed.
It is hoped that the community will be of assistance to pharmaceutical companies when identifying patient unmet needs, as well as, when designing clinical trials for improved treatments. The entire ethos of the Google global community will be to share best practice and best patient care across a global platform. Please sign up to be a member here.
As I stated at the beginning of Scleroderma Awareness Month, an educated, empowered Scleroderma patient makes for an easier Scleroderma patient experience, in my view. A global team effort focused on a scleroderma-free world will make this dream into a reality.