It is never too late to join the RAPSODI study and we are particularly looking to recruit close blood relatives (e.g. parents, siblings, children), of our participants with Gaucher's disease and GBA mutation carriers. For more information, please email us at [email protected]

Today is #rarediseaseday to raise awareness and generate change for 5% of the population living with a rare disease including #GaucherDisease

A rare disease is defined as a condition which affects less than 1 in 2,000 people. #RareDiseaseDay #GaucherDisease 💙💚💜

We are delighted that the MPS Society UK, here for those with rare diseases advocacy team are supporting the Gaucher community. Any support needs do get in touch, if you’re unsure contact Sarah in the office on 01453 549231

Today we celebrate women's achievement. Raise awareness against bias. Take action for equality on #InternationalWomensDay2022 #BreakTheBias

📣 We need your help We have a small number of places remaining for #RideLondon on Sunday 29th May please share with your cycling friends, pass our details onto anyone who may be interested. Contact Sarah in the office on [email protected] #Cycling #fundraising #Gaucher

Do you have the right skills to join our small dedicated team? If you would like to give something back to the Gaucher community and find out more get in touch with Sarah in the office on [email protected] #Gaucher #TogetherWeAreStronger #Trustee #Treasurer #SmallCharity

**COUNTDOWN IS ON** Launching on 25 April, the #GARDIANregistry for people with #Neuronopathic #GaucherDisease. What is it? How can it improve #PatientCare? Who can take part? Find out the answers to your questions in our new FAQ: bit.ly/gardianfaqs

⏱Time is running out to secure your place at the start line for the return of Ride London on Sunday 29th May and support us! Get in touch with Sarah in the office to find out more 🚴‍♀️🚴🚴‍♂️🏅

We have partnered with @RareMindsCIC offering Gaucher patients and their carers free access to counselling. Visit our website to find out how to access this service gaucher.org.uk/the_gauchers_a… #MentalHealthAwarenessWeek2022 #Gaucher #support #loneliness

Raise your 🖐 if you'd like to help drive research in type 2&3 #GaucherDisease that could generate more effective treatments in future. It couldn't be easier! The global #GARDIANregistry is collecting anonymised patient and caregiver data to meet this aim: gardianregistry.org

Are you struggling with your #mentalhealth #isolation living with #GaucherDisease ? If so do get in touch with Sarah in the office to put you in contact with @RareMindsCIC who offer a dedicated counselling service to Gaucher patients and their families #support #raredisease

What are our ambitions for the #GARDIANregistry in type 2 & 3 #GaucherDisease #nGD? Simple, to improve the understanding and management of nGD among medical professionals and to highlight the challenges of living with this ultra #RareDisease. REGISTER at gardianregistry.org

It's completely free to raise vital funds for us through Give as you Live 💙❤️💚 double donations starts today until 31st May 🎉

The incredibly talented young singer songwriter Poppy Brownnutt has written a song about her cousins, Caleb and Ellie Mae, who died of CLN2 Batten disease. We are so proud 🧡#battendisease

Living with #GaucherDisease or dealing with a new #diagnosis can be psychologically and emotionally challenging at times so do get in touch with Sarah in the office to find out how to access this service with @RareMindsCIC #wellbeing #support

We would like to thank all our participants with #Gauchersdisease for supporting our study and helping us understand the link between the #GBA gene and Parkinson's disease. Your help is invaluable to our work!

The office will be closed from 4.30pm on Wednesday 1st June until 9.00am on Monday 6th June for the Queen's #PlatinumJubilee Bank Holiday weekend #bankholiday #jubilee2022

Gauchers Association strive to make sure information regarding #GaucherDisease is as up to date as possible for both #medical staff and #patients and aim to encourage #treatment options being available.

It is never too late to join the RAPSODI study and we are particularly looking to recruit close blood relatives (e.g. parents, siblings, children), of our participants with Gaucher's disease and GBA mutation carriers. For more information, please email us at [email protected]