AMEND news in 2021
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Pet & Pamper Raffle Winners Announced!
Today, the draw took place to find the winners of our three raffle prizes (First prize: pet portrait by artist, Robert Ballentine; Second prize: a scented candle and room diffuser from Willow & Tea; Third prize: a £25 Amazon gift voucher). Click on the link to watch the video and find out who won!
Click to learn more
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Member To Run London Marathon in Memory of his Mum
Josh Dickson will be running the 2021 London Marathon in memory of his Mum, Philippa Dickson, who died from cancer in 2016. As 2021 will mark the 5th anniversary of her death, Josh decided to run the Marathon in her memory to raise money for AMEND. Please sponsor Josh if you can. Thanks
Click here to sponsor Josh
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AMEND Trustee Calls for End to Price Gouging
AMEND Clinical Trustee, Professor Karim Meeran, has started a petition to request that the government put a stop to 'price gouging' on generic drugs such as hydrocortisone. He also calls for the NHS to lead on making its own affordable, generic drugs. Learn more about 'price gouging' and SIGN THE PETITION.
Click here for more information and to sign the petition
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Get Ready for Thyroid Cancer Awareness Month!
September is Thyroid Cancer Awareness Month, and we'll be raising awareness of medullary thyroid cancer. Here's how you can help.....!
Click here for more information
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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.
Click here for more information
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New video on MEN1 with Prof Thakker
AMEND were pleased to be invited to produce a Patient Voice film for the European Congress for Endocrinology in May. We have now made this available publicly.
Click here for more information
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Levothyroxine: New prescribing advice for Health Professionals
The UK's Medicines and Healthcare products Regulatory Authority (MHRA) has issued new prescribing advice for health professionals regarding patients who experience issues when switching between different levothyroxine products.
Click here for more information
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Survey of Musculoskeletal Problems in MEN2B
Whether or not you have any issues with your muscles or bones, you can help doctors to better understand these issues in MEN2B by completing this survey, which is part of a Masters (MSc) dissertation project by Jamie Henderson at Queen Mary University London.
Click here to complete the survey
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UK Rare Disease Framework
The Department of Health & Social Care published it's UK Rare Diseases Framework on January 9th 2021. The Framework will set out a coherent, national vision on how the UK will improve the lives of those living with rare diseases.
Click to learn more
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Rare Disease Day 2021
This Rare Disease Day (Sunday 28 February), we will be launching our brand new resources for young adults (aged 13-30). Thanks to our wonderful volunteers, these include a range of films on aspects of living with MEN syndromes as a young person. These will be available from 9am on the 28th on our website and social media channels!
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