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Did you know we’ve launched a brand new forum for all kinds of #amyloidosis topics on our website? Visit the forum via the link below, you'll find instructions on how to join there. Please feel free to hop on and start some discussions! amyloidosisuk.org/forums/

Do you live with hereditary transthyretin #amyloidosis (ATTRv)? Please join us increasing knowledge about what it is like to live with ATTRv in the UK. Read more about our large study covering United Kingdom of Great Britain and Northern Ireland here: amyloidosisuk.org/attrv-study/

Holistic healthcare treats the whole person, not just the disease. In #amyloidosis, combining medical care with physical, nutritional and emotional support can improve quality of life. Read more here: amyloidosisuk.org/news/health-ca…

Amyloidosis diagnosis is often delayed, despite better tests and awareness. No matter the type or location, many face this struggle. Why? Read more: amyloidosisuk.org/news/the-diagn… #Amyloidosis #RareDisease #DelayedDiagnosis

We’re excited to announce that Amyloidosis UK has partnered with Cardiomyopathy UK to launch the first online support group specifically for individuals affected by cardiac #amyloidosis. Find out more: amyloidosisuk.org/news/new-onlin…

The Path to Diagnosis: A guide to help you understand past experiences and prepare for future appointments with healthcare professionals. Read more… amyloidosisuk.org/news/the-path-… #amyloidosis #diagnosis

The Path to Diagnosis: A guide to help you understand past experiences and prepare for future appointments with healthcare professionals. Read more… amyloidosisuk.org/news/the-path-… #amyloidosis #diagnosis

In The Path to Diagnosis: Part 2, we focus on information that will enable you to advocate for yourself (and / or your loved one) and to be actively involved in decisions about your (and / or your loved one’s) health. #amyloidosis amyloidosisuk.org/news/the-path-…

📷 Navigating #amyloidosis diagnosis? Part 2 of our guide delves into the crucial detective work—understanding tests vs. investigations, and how biopsies and staining confirm amyloid deposits. Empower yourself in the diagnostic journey! 🔗 Read more: amyloidosisuk.org/news/the-path-…

The next Cardiac Amyloidosis (ATTR-CM) Online Support Group session will take place on June 19. If you’re affected by Cardiac #Amyloidosis (ATTR-CM), come along and meet the community with Cardiomyopathy UK specialist nurse Jayne. eventbrite.co.uk/e/cardiac-amyl…

Just a reminder that the next Cardiac Amyloidosis (ATTR-CM) Online Support Group session will take place on Thursday June 19, see all the details below… #amyloidosis

We’re looking for more peer support volunteers from the #amyloidosis community. Working with Cardiomyopathy UK, volunteers will be trained to offer one-to-one phone support to others living with the condition. Learn more or request support here: cardiomyopathy.org/heart-to-heart

This weekend we’ll be at the #Amyloidosis Ireland Conference 2025: “Moving Forward is the theme. With so many people facing obstacles & difficulties in getting a diagnosis & treatment, we want to leave room for discussion about challenges for us & our healthcare providers.”

We’ve arrived in Belfast! Just on our way to Derry now to participate in the #Amyloidosis Ireland Conference 2025. We’ll do our best to share all the helpful learnings that emerge from these discussions and presentations with you upon our return.

We caught up with Christine Chiti at the #Amyloidosis Ireland Conference 2025. Christine is the TTR specialist nurse at the National Amyloidosis Centre, London. She outlined how she supports people through their often difficult post-diagnosis journeys: youtu.be/UeIJUryO2xE

Just a final reminder that there are still a few places left for the next Cardiac Amyloidosis Online Support Group session this Thursday June 19 from 14:00–15:30 BST. If you’re interested use the link below and get yourself a ticket. #amyloidosis eventbrite.co.uk/e/cardiac-amyl…

Have you been diagnosed with the v122i #amyloidosis variant? We’re working with an industry partner to form a small virtual Patient Advisory Board for people of Black African & African Caribbean heritage living with this condition. If interested email [email protected]

The aim of this is to shine a light on the real-life challenges of living with v122i #amyloidosis & help shape future support, care & awareness efforts. * Takes place week of June 30 * 3-hour online session w/ a few others * You’ll be reimbursed for your time

Sharing again as the #v122i #amyloidosis community is far too underrepresented. Please repost.