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

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by Nicola Whitehill |

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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!