As part of a European research study, Genetic Alliance UK and researchers at the University of South Wales want to understand how patients perceive the risks and benefits of medicines. The work is important to ensure that patient views are valued in the regulation of new medicines.
If you are 18 or older, and you are a patient or a carer, you can help us by completing a short online survey. The survey includes questions about your experience with medicines, your view of the risks and benefits associated with medicines, and how you think medicines should be regulated.
The survey is available in several different languages.
Click here for further information and direct links to the survey.
RESEARCH: TALKING TO CHILDREN ABOUT INHERITED GENETIC CONDITIONS - Update!
The research project “Talking to Children about inherited genetic conditions” launched on 1st September 2013. The project works collaboratively with families (parents, children and young people) with an inherited genetic condition to develop an intervention that will support families to communicate more effectively with their children (<18 years) about the genetic condition affecting their family and its risks.
We received a large number of expressions of interest from families wanting to take part in the study. As a result of the discussions about families involvement we have extended the number of focus groups to include one a group where parents haven't spoken to their children can help us to develop the intervention. This focus group will be held on 23rd November 2013.
For details on this and other ways in which to get involved in research, visit our Patient Involvement in Research webpage.
Saturday 5th October, 2013, from 2:00-2:30pm
Please be hereby advised of the above meeting called by the Board of Trustees of AMEND, pursuant to the agreement in principle of the membership at the May 2013 Annual General Meeting of the charity to the change of AMEND from an Unincorporated Charity registered in England and Wales to a Charitable Incorporated Organisation (CIO) registered in England and Wales.
Registered members of AMEND are encouraged to attend to cast their votes on the proposals, or to submit a proxy voting form.
This short meeting will be followed by an Ask the Doctor Session hosted by AMEND Trustee and Consultant Endocrinologist, Professor Karim Meeran, from 2:30pm - 4:00pm
For more information visit our webpage on the potential change to CIO.
The Board of Trustees looks forwards to meeting you!
Everyone has a hero – a person whose support, faith and positive energy are crucial in one’s journey through life. We all need a shoulder to lean on.
Name Your NET Hero to mark Worldwide NET Cancer Awareness Day on November 10th. Send in a photo of your NET Hero, and a line or two describing why he or she is your hero. Be it your doctor, nurse, spouse, friend, partner, colleague, etc., or all of them, bring these people to the spotlight, make their names and faces recognized on a global scale!
Many people around the world have NET (neuroendocrine) tumours or NET cancer as part of their lives, including those with MEN, SDH and associated conditions. Their stories with the disease make them heroes. Let’s bring our NET heroes from around the world together here on our Facebook page and the NET Cancer Day website.
Here’s how to participate. Upload your photo to the NET Cancer Day Facebook page and post a comment describing your hero. NOTE: It is very important that you include #NETHero in your comment. This will ‘tag’ your photo and send it through to our special NET Hero page on the NET Cancer Day website). You can view all of the NET Heroes on the website.
The latest AMEND newsletter is now available for members to read.
This quarter we say 'au revoir' to Janet, who retires after 10 long years of dedicated volunteering for AMEND; there is news of an All Members' Meeting in October to vote on the future structure of our charity; an update on Project Superhero!; some Research Registry opportunities for patients, and a whole lot more!
Please log in and visit this webpage where you will be able to view all the latest news.
Would you like the opportunity to learn more about research being done into tumour growth using animal research? The use of animals in research is a fascinating and important part of medical research but it is an area that is often not well presented or understood.
To introduce patients to animal research, Genetic Alliance UK and Understanding Animal Research would like to invite those affected by MEN and association conditions to a free workshop which will explain how and why animals are used in medical research and why this is important to the development of treatments for genetic conditions.
In this one-day workshop, presentations will be given by different research scientists who are researching things including the formation of tumours and how they grow. They will discuss and answer questions related to their understanding of current research, how, why and when they use animals in their study, when it is appropriate to use alternative methods, and their feelings on the ethics of animal research.
Patients and/or carers will have the opportunity to talk with people working at the cutting edge of research into relevant condition areas, as the researchers explain their take on the conditions that they study and the different approaches used to investigate them.
The day will also include a tour of an animal research facility, showing how the animals that are used are kept and cared for. The day will offer insights into how medical research is carried out and how pieces of the puzzle are fitted together to improve understanding and treatments in the clinic.
The event will be held in central Cambridge on 29th November from 10am.
AMEND had a 10-strong team this year at the annual British 10k London Run on Sunday 14th July. This was our biggest team yet, despite two runners not being well enough on the day to participate.
Temperatures on Sunday soared to 30 degrees celsius making running pretty uncomfortable, but they all romped home in the end, some still running, others staggering!
A massive thank you to the whole team, who so far, have collectively raised over £3100 / $4700 for AMEND, with more to come.