RareConnect Webinar: May 4th – How To Start an Awareness Day for Your Rare Disease

RareConnect Webinar: May 4th – How To Start an Awareness Day for Your Rare Disease

DATE FOR YOUR DIARY: The webinar will take place on Wednesday, May 4th, 6:00pm London time, 7:00pm Madrid, 1:00pm New York City, 10:00am Los Angeles

It gives me great pleasure to announce that Rareconnect have invited me to be a presenter at this forthcoming Webinar, along with Timo Söderlund, Aortic Dissection Organization Scandinavia, Sweden.

To view details and register for the event click here.

Living with a rare disease brings with it many additional challenges by virtue of it being a rare disease. However, there are many common, similar features experienced by rare disease patients, even though they may not have the same diagnosis.

These similarities include, by way of examples, the importance of an early diagnosis, improved medical research and treatments, and access to new innovative treatments.

Many rare disease patients, sadly, experience the soul destroying feeling of leaving a medical expert’s office, having been told that there is little understanding of their condition and the symptoms which they present. With, this scenario actually being more favourable to the regular rare disease favourite ‘We do not know’.

I have discussed Rare Disease Day 2016: A highlight on Scleroderma in my blog. Read my article here.

Logo_HorizIn addition, I included an article on the Rare Disease UK reception at the House of Commons 2.3.16. Read it here.

World Scleroderma Day is held on the 29th of June each year. To read my recent article on the origins behind the date of World Scleroderma Day, click here.

To view my landing page index, click here.

Please join us on Wednesday 18.00h London time, where we will be discussing further how you can raise awareness and educate in the rare disease arena, sharing best practice ideas and ways that you can get involved helping your rare disease community.

If there is anything in particular which you would like to be covered in the Webinar, please post in the comments below!

I look forward to seeing you on Wednesday!

Together, united globally, we will crack the rare disease codes!

Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.
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Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.

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