UK Rare Disease Framework
The Department of Health & Social Care published it's UK Rare Diseases Framework on January 9th 2021. The Framework will set out a coherent, national vision on how the UK will improve the lives of those living with rare diseases.
Rare Disease Day 2021
This Rare Disease Day (Sunday 28 February), we will be launching our brand new resources for young adults (aged 13-30). Thanks to our wonderful volunteers, these include a range of films on aspects of living with MEN syndromes as a young person. These will be available from 9am on the 28th on our website and social media channels!
Desert Trek to Petra
Join us on our fundraising trek through the desert in Jordan to the ancient city of Petra! A great adventure and challenge for October 2022. Sign up now!
Annual Information To be Held in October
We are maintaining our optimism with regard to our free 2021 Annual Patient Information Day! Rescheduled to Saturday 16th October and held at the Paddington Novotel in London, we hope to see you all there again in person! Book Now...
Pet & Pamper Raffle!
Enter our 2021 Pet & Pamper raffle for a chance to win an exclusive hand-drawn pet portrait by artist, Rob Ballentine, or your choice of scented candle and room diffuser from pamper experts, Willow & Tea. All profits support AMEND!
Exclusive Tees for Rare Disease Day
We have developed an exclusive design for our t-shirts and reusable bags for Rare Disease Day which this year falls on February 28th. Order this weekend (29-31 January) and postage is free! This design is available in black, white, grey and AMEND signature yellow-gold. Get yours now!
Virtual Support Meeting Dates Confirmed
The dates for the first three virtual peer support meetings for 2021 have been confirmed, with the 1st to be held on Saturday 30th January. All those with or caring for someone with an MEN or PGL syndrome are welcome to join in to share experiences to help others. Registration is required but the events are free.
COVID-19 Survey Results Updated
We continue to regularly update the results of our survey of people with multiple endocrine neoplasia disorders who have had COVID-19. To date, we have data from 29 people.
2021 Annual Information Day Update
Due to the continued risk from the Coronavirus pandemic, the 2021 Annual Patient Information Day has been moved from May to October.