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Achalasia Action and Rare Disease Day 2024

Achalasia Action
Achalasia Action Rare Disease Day

Rare Disease Day is on 29 February – will you join Achalasia Action in raising awareness of achalasia and our supportive community on the rarest day of the year?

Rare disease day is a global movement focused on creating visibility, inclusion and community for the over 300 million patients with rare diseases worldwide. You can find out more about Rare Disease Day here.

This connects with Achalasia Action’s core imperative to offer support and community to patients with achalasia in the UK and around the world. 

Achalasia Action was founded through the support groups that we continue to organise today, and we believe that sharing stories and experiences can be a powerful counter to the feelings of isolation, frustration and discouragement that people with achalasia can often experience when interacting with acquaintances, medical professionals, and even friends and family.

That’s why this rare disease day, we’re encouraging people with achalasia to share their stories of finding support, community and understanding and the impact it’s had on them – whether they found it online or in person.

Here’s what can you do to shine a light on achalasia and our supportive community on Thursday 29 February:

  • If you’re comfortable to, share your achalasia story on any social media (Twitter, Instagram, Facebook and Linkedin):
    • Describe your story of finding support, community and understanding, whether online or in person, and the impact it’s had on you
    • Use the hashtags #AchalasiaSupport #AchalasiaAction #RareDiseaseDay
    • Share our website link in your post: and tag us @achalasiaaction
  • Spread the word: ask your friends, families and followers to reshare your story, by tagging them on socials or asking them directly
  • Re-share any achalasia stories you see on your social media feed

In the lead-up to the day, and on 29 February, Achalasia Action will also be publishing people’s stories on its social media platforms, accompanied by a photo of you. If you’re happy for your story and picture to be featured by Achalasia Action, please contact We will help you write your story and post it on our social media accounts on the lead-up to 29 February, and on the day.

Your participation will help increase empathy, promote awareness and understanding, and could even drive legislative and policy change for achalasia and other rare diseases. We are so excited to see the achalasia community unite for this rare swallowing condition, and other rare diseases, on 29 February!

Lorien smiling and holding a black puppy

Lorien Schipperus’s Achalasia Story

On Rare Disease Day, Lorien tells us of how her achalasia was misdiagnosed and of how important it has been for her to receive support from her family, friends and the wider achalasia community