Rare Disease Day is observed every year on 28 February, and in leap years on 29 February, the rarest day in the calendar.
Rare Disease Day is a globally-coordinated event established to raise awareness of rare diseases ensuring that sufferers are not forgotten and have the proper access to the correct healthcare, including access to diagnosis, therapies and treatments.
Rare Disease Day provides a national and international focus for our condition TN. Thanks to data now being officially collated we can say that 12 people out of every 100,000 are diagnosed with TN in any given year.
But for many, including me, joining the TNA was the first time I had met anyone else with TN. I have spoken to a new member, Jane*, and she was happy for me to share her recent journey.
‘I was scared and shaking the pain was so severe, I had just been diagnosed and I used Google to read that I now had the suicide disease. My daughter and I cried all morning, I finally plucked up the courage to call 0800 999 1899 the TNA helpline. I needed help and I got it!
I was not alone and was invited to join the National Zoom which was that week.
I saw there were over 250 other people that were members online and felt I was in a safe space where I could listen and learn more about this cruel, cruel disease.”
For 4 years Jane had lived with horrific pain like burning from an electric shock. She couldn’t brush her teeth for the pain, and even had 8 teeth removed before she was finally diagnosed.
Jane is struggling with her medication but is going to join her Regional Support Group which hopefully will soon be meeting again face to face.
Coming together, supporting each other is a crucial part of what we do at TNA. Please don’t suffer alone we have our telephone helpline and email helpline that are there for you. The call is taken by one of our wonderful volunteers who is a fellow sufferer or a carer for someone with TN.
Your donations mean the world to TNA and help us help others with TN this rare disease day, do something amazing and support us.
*name changed
Mother’s Day Memories Page
We have created a website page for anyone wishing to remember a loved one on Mother’s Day.
You can follow the link below upload a photo, a verse or share memories dedicated to our Mum’s on this special day.
LONDON
MARATHON
Run for TNA
Are you a runner?
Would you love to run the TCS London Marathon?
Join thousands of runners on the streets of our capital to raise awareness and fundraise for TNA
We are delighted to offer charity places to passionate Team TNA warriors and will support.
Were you awarded a place in the official 2022 TCS London Marathon ballot?
Are you carrying your place over, due to the 2020 event being cancelled? Or did you gain a place via your running club’s allocation?
GREAT! We would love for you to join Team TNA
London 02 October 2022. 26.2 miles/42.1 km
