Rare and Undiagnosed Conditions Q&A: ask your questions now!

Jayne451

lneale20 said:

Hi Jayne. 

Thank you for sharing your story. I have been diagnosed with a rare condition called achalasia for almost 5 years but still find a lot of drs don’t know what it is or believe me about it’s severity. How would you recommend that I raise awareness and belief in the medical world? Thank you ? 

Hi @Ineale20 

A good way to raise awareness is to work with others. I've had a look around and found a mutual support group - http://www.achalasiaawareness.org/ that operates in a number of countries including the UK. The Achalasia Awareness Organisation are supporting Rare Disease Day which is an opportunity to raise awareness of all rare disease. 

Our Rare Disease Day 2019 awareness raising campaign,"illuminating the rare reality" is now live.  You can join in by creating a "virtual star" to share your own awareness raising message. By following the link below you will be able to see the stars created and shared through social media to raise awareness (there are 371 at the moment). You can create and share your own star there too if you would like.
https://rarereality.raredisease.org.uk/

To anyone interested in raising awareness I'd say please do join in with our Rare Disease day campaign - and look out also for other opportunities to get involved by signing up to our campaign and newsletter at raredisease.org.uk

Pippa_Alumni

Thank you so much to @Jayne451 and Genetic Alliance UK for giving their time and sharing their expertise here on the community! We really appreciate it. 

The Q&A has now come to an end, but you can find their team on the Genetic Alliance UK website. You may also be interested their Rare Disease Day awareness campaign for 2019. Thanks to all members who joined in and asked their questions, and I hope you found this session useful!