AMEND news in 2019
Crisis Card for Phaeo/Para Patients
AMEND's Phaeochromocytoma & Paraganglioma Crisis Card is a potentially life-saving initiative to help ensure that patients with these functional tumours are not given medicines that may make their condition worse. The cards will be distributed via clinicians who can order them from our NHS Resources webpage.
AMEND Grants 4 Research Awards
AMEND has awarded 4 grants in the 2019 round of Research Awards. The grants, totalling almost £30,000, include projects on MEN1, SDH disorders and Adrenocortical Cancer.
MEN2B & Me films launched
The first in our series of films about patients with rare endocrine diseases launches today, Saturday 11th May, with a showing of MEN2B & Me: Ethan (own words) at the 2019 AMEND Annual Patient Information Day.
New resource for partners and carers
Kym Winter, AMEND's Lead Counsellor, has written a new booklet for partners and carers of those with rare endocrine conditions. We hope that the tips and advice contained within 'Looking After Yourself: a guide for partners & family members' will help you to support your partner or family member. Written in 2019 and copyright of AMEND
Patient Survey on Research Priorities
AMEND and the NET Patient Foundation launch new joint survey to gather patient opinions on research priorities. Results will help to formulate a joint research strategy.
Rare Disease Day Twitter Chat
AMEND's first live Twitter Chat will be held on Rare Disease Day - Thursday 28th February, 2019.
Regional Meetings for 2019
Our Regional Meetings project enters its second year this year. Keep an eye out on our website and on Facebook for existing scheduled dates and future events as they are added. These small patient meetings welcome anyone with MEN or SDH syndromes, adrenocortical cancer (ACC) or sporadic medullary thyroid cancer (MTC). Free and informal with refreshments provided - booking essential.
AMEND Research Fund Open to Applications
AMEND's 2019 Research Fund is open for applications. From a total fund of £30,000, £20,000 will be available specifically for projects looking at MEN1-related research (in memory of Nick Fayers), and £10,000 will be available as usual for projects into any of the conditions associated with AMEND (MEN1, MEN2A, MEN2B, SDHx, MTC and ACC – and the tumours associated with these conditions).
2019 AMEND Patient Information Day – book now!
Our popular Annual Patient Information Day will be held in Sheffield, S. Yorkshire, on Saturday 11th May, 2019. This is a wonderful opportunity to meet other patients and carers, but also to learn about the disease that affects you and your family, and other useful topics. Expert medical professionals ensure that the information you receive is accurate. We welcome all those affected by multiple endocrine neoplasia (MEN) disorders, phaeochromocytoma and paraganglioma syndromes (SDHx), adrenocortical cancer (ACC) and sporadic (non-hereditary) medullary thyroid cancer (MTC). Tickets are free so book now before we run out!