AMEND news in 2021
UK Centres Awarded Centre of Excellence Status
St Bartholomew's Hospital in London, and Addenbrooke's Hospital in Cambridge, have both been awarded Centre of Excellence designation by the US-based Pheo Para Alliance, for the treatment and care of patients with phaeochromocytomas and paragangliomas.
Community Advisory Group Members Sought
Due to the recent increase in requests for patient perspectives into research projects and clinical trials, we are seeking enthusiastic, knowledgeable and motivated people with a former or current diagnosis of phaeochromocytoma, Paraganglioma or a phaeo/para syndrome to volunteer in our Community Advisory Group,
Get Ready for Phaeo Para Awareness Week!
Monday 23rd to Sunday 29th August is Phaeo Para Awareness Week, and we'll be raising awareness of phaeochromocytomas and paragangliomas throughout. Here's how you can help.....!
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.
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 yellow. Get yours now!
New Date for Information Day
Due to the continued risk from the Coronavirus pandemic, the 2021 Annual Patient Information Day has been moved from May to October.