AMEND news in Tag: PPGL
NETS in RETS
November 10th each year is NET Cancer Day, initiated by the International Neuroendocrine Cancer Alliance, of which AMEND is a member representing genetic neuroendocrine tumour syndromes. To better explain the link between NETs and RETS (rare endocrine tumours and syndromes), join us for our webinar, NETs in RETS, with Professor Karim Meeran on Thursday 9th November from 18:00-19:00.
AMEND Annual Patient Information Day Success
The sun was shining on Saturday 20th May in London for our Annual Patient Information Day, and our venue beside the Regent’s Canal was the perfect place to receive all the members of our rare endocrine diseases communities who had booked to attend.
AMEND Awards 2 Research Grants for 2022
The Trustees are pleased to confirm the AMEND Research Awards for 2022. Our thanks to all the applicants, our judges, the Elliot Dallen Trust and fundraisers, the Akarca brothers.
2022 Annual Patient Information Day
Our 2022 Annual Patient Information Day for anyone affected by MEN and PPGL syndromes, ACC and MTC, will be held at the Holiday Inn, 25 Aytoun Street, Manchester M1 3AE, on Saturday 7th May. We would love to see as many of our members and friends there as possible. For more information on the programme and local hotels, as well as to book your spaces, please visit our dedicated webpage.
Community Advisory Groups Still Recruiting
We are still seeking enthusiastic, motivated and knowledgeable people to volunteer as members of our Community Advisory Groups (CAGs) for MEN2, MEN3 and PPGL syndromes. Our CAGs are already established for MEN1, ACC and MTC and some have already been involved in research projects and other activities.
Community Advisory Groups Now Recruiting
Due to the recent increase in requests for patient perspectives into research projects and clinical trials design, we are seeking enthusiastic, motivated and knowledgeable people to volunteer in our Community Advisory Groups. These are available for MEN syndromes, PPGL syndromes, ACC and MTC.
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.
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).
Research Fund Application Deadline Extended
AMEND's Research Award applications deadline has been moved from April 30 to August 31, 2020. We know that most new research projects have now been postponed due to the current coronavirus pandemic, so hope that this new deadline will be more achievable.