AMEND news in 2020
AMEND Face masks now available to buy
AMEND's new, superior 3-layer cotton, washable and resusable face masks are now available to buy from our online shop in adult and children's sizes.
New Group for PPGL Syndromes Launched
AMEND are delighted to announce the formal formation of a new sub-group of our charity; Phaeo Para Support UK. PPSUK is a part of AMEND specifically designed for our members with inherited Phaeo Para Syndromes (such as those caused by SDH, TMEM127 and MAX mutations).
New Fundraising Events
Our website lists a wide variety of ways that our members and supporters can fundraise for AMEND during these strange times, from running to cycling and everything in between! Why not encourage your friends and family to support AMEND, a small charity that works hard to provide all its information and services for free to those who need them?
Phaeo Para Awareness Week
For the last week of August, we are thrilled to be partnering with the Pheo Para Alliance in the USA and other patients organisations to raise awareness of phaeochromocytomas, paragangliomas, and in particular, the tumours that occur in MEN2, MEN3 and Phaeo Para Syndromes.
Updated Advice for the Extremely Vulnerable
22/06/2020Today, the Government is outlining the next steps for those people in the UK who were identified as extremely vulnerable, and who have been shielding since lock-down. These changes are implemented beginning 6 July.
Design a Gland Competition!
For Children's Art Week (science theme) from 29th June to 5th July, we'd like our youngsters to Design a Gland! It can be as weird, wacky and colourful as they like. Submit entries by 5th July to be in with a chance of winning one of our prizes.
Cancer52 Patient Survey on COVID-19
✍️ Cancer52, an umbrella group for rare cancers, is running a patient survey for cancer patients regarding your experiences during the coronavirus crisis. They will use the results of the survey to understand how the Covid-19 crisis has affected people with rare and less common cancers particularly on topics like treatment and support; any issues around shielding, and anxieties, concerns and hopes for the future.Please contribute as an endocrine/neuroendocrine cancer patient if applicable. Thanks! 👍
COVID-19 Study Results Updated
We are now up to 21 responses from people with MEN syndromes to our research study on COVID-19. These include 3 people who needed to visit hospital for severe breathing problems.
Introducing SDH Syndromes Films’ Launch
We are delighted today to launch our new patient experience films about Succinate Dehydrogenase (SDH) Syndromes. These were produced as part of our SDH Support UK project thanks to a grant from Advanced Accelerator Applications.
New Dates for Members’ Meetings
Wherever you live, AMEND members are welcome to join any of these gatherings, but you must register first. Sadly, you will need to provide you own tea and biscuits! Online meetings for our members have been organised so far for the following dates:
- Saturday 9th May (2-3pm)
- Saturday 13th June (10am)
- Saturday 4th July (2-3pm)