AMEND news in Author: sdh_admin_control

AMEND's latest Webcast on the topic of Guidelines will be launched on Friday 24 January at 7:30pm.  In this episode, our CEO, Jo Grey, talks to Dr Carla Pieterman, about how guidelines are developed and by whom, as well as why doctors sometimes need to deviate from the recommendations.

Click here to view this and other Webcasts

Shop Christmas in aid of AMEND/PPSUK!

Visit our online shop for some of your Christmas essentials!  We have some gorgeous Christmas Cards, as well as an entire clothing store of sustainable cotton pieces, including those with festive designs.  All proceeds go to support our work for families affected by rare endocrine syndromes and tumours.

Click here to visit our shop

AMEND 2024 AGM Rescheduled

Registered members will have received an email regarding the AMEND AGM that was to be held at midday on Thursday 31st July. Due to insufficient numbers of votes to reach a quorum, the AGM has now been rescheduled to Wednesday 15th August, with the voting link remaining active up until 6pm on the 14th.  If you have already voted, you do not need to do so again.  If you haven't seen an email, please check your spam/junk folder.  Thank you in advance to all members who action the email as requested to engage in this important exercise in transparency as required by the UK Charity Commission.

Special Event for Scottish Members

Come and join Peer Support Volunteer for Scotland, Amanda Shaw, with special guest, Genetic Counsellor, Nicola Bradshaw, on Saturday 14th September for networking, peers support and information at this in-person event near Glasgow.

Click here for more information and to book

AMEND's 2024 Annual Patient Information Day will be held on Saturday 1st June, in central Birmingham. This event is open to anyone affected by MEN or PPGL syndromes, as well as for those affected by ACC and MTC.  Come along and benefit from a 2-hour Q&A session with an expert in your disease, as well as plenty of other relevant sessions.  There is a separate stream for young adults from 12 years of age. Tickets are free but donations are appreciated.

Click here for more information and to book

New! Young Adults’ Survey

This year, AMEND wants to hear from our younger UK community members aged 12-25 about how their or their sibling’s condition affects them (if at all!), and what they would like to see AMEND do for them by way of activities and resources over the coming months and years. To do this, we have designed two short surveys (ages 18-25 and 12-17) that should take no more than 10 minutes to complete.

Click here for more information

NETs in RETS

November 10th each year is NET Cancer Day, initiated by the International Neuroendocrine Cancer Alliance, of which AMEND (and therefore PPSUK) is a member representing genetic neuroendocrine tumour syndromes.  To better explain the link between NETs and RETS (rare endocrine tumours and syndromes), watch our webinar, NETs in RETS, with Professor Karim Meeran, recorded on Thursday 9th November.

Click here to learn more

Big Give 2023 Christmas Campaign

Once again, we are running a fundraising campaign in the run-up to Christmas 2023, raising much needed funds to continue to provide our free, professional Counselling Service to our most vulnerable members. The Big Give Christmas Campaign gives us the chance to double general donations during November/December.  Our first step is to find our Pledgers. Pledgers are people or organisations who provide the initial Match Funding by promising to donate a sum over £100. The deadline for the collection of Pledges is 1st September. These Match Funds will be used to double donations of all sizes during the donation period, until they are used up. Pledges are promises of funding, and are paid after the donation period ends, and the total amount depends on the total donations received. If you or someone you know could help us by becoming a Pledger, please follow the link below for more information and to Pledge.

Make a Pledge

2023 Annual Patient Information Day Success

The sun was shining on Saturday 20th May for our Annual Patient Information Day, and our venue beside the Regent's Canal in London was the perfect place to receive all the members of AMEND's rare endocrine disease communities, including those with phaeo para syndromes (PPGL).

Click to learn more

Kids’ Cartoon Reaches Finals of Film Awards!

We are thrilled that our cartoon for kids about PGL syndromes has reached the finals of the Charity Film Awards! We now have a chance to win a People’s Choice Award if we get enough votes in the 2nd round. So, even if you voted for our film in the first round, please do vote for it again by Friday 10th March! Thank you!

Click here to view and vote