REMINDER: the next Cardiac Amyloidosis Online Support Group session is in 2 days time — Thursday June 11. Spaces are still available…

Researchers unveiled a new multimodal AI algorithm for cardiac amyloidosis diagnosis, a tool showing promise for greater accuracy and sensitivity in the real world. https://www.medpagetoday.com/cardiology/chf/121505

Europe’s first CAR T-cell therapy trial for light chain amyloidosis https://www.europesays.com/ie/515050/ Three patients in the UK have become the first in Europe to receive CAR T-cell therapy for light…

‼️ #ASCO26 simultaneous publication by Wechalekar et al: Efficacy and Safety of Anselamimab in Immunoglobulin Light Chain (AL) Amyloidosis: Results from the Randomized CARES Trials Read the full article: https://bit.ly/43xGa5m

Potential #antibodytherapies from #AstraZeneca and #Regeneron for light chain (AL) #amyloidosis had new data at #ASCO, raising the prospect of new treatments for the rare bone marrow disease. pharmaphorum.com/news/asco26-...

FYI we currently have 3 opportunities for patients & carers: 1) Sharing experiences of inherited ATTR amyloidosis (or ATTR polyneuropathy 2) Familial Amyloidosis Polyneuropathy (FAP) Columnist 3) ATTR Amyloidosis Documentary Visit our website for more details: amyloidosisuk.org/for-patients...

A heartfelt thanks to Steven, Stephanie & Michelle for their fundraiser: “In memory of our lovely Wife and Mum, Fiona Taylor” and we’re so sorry for your loss. amyloidosisuk.enthuse.com/pf/stephanie...

Just a reminder…

You can now reserve a space for the next Cardiac Amyloidosis (ATTR-CM) Online Support Group session on June 11. We run these sessions in collaboration with Cardiomyopathy UK. www.eventbrite.co.uk/e/cardiac-am...

Today is Clinical Trials Day! We’re proud to spotlight the National Amyloidosis Centre for their work testing new & existing treatments for various types of #amyloidosis. Accurate diagnosis & swift treatment are vital — outcomes depend on both. #ClinicalTrialsDay #CTD2026 #ResearchRising

May 20 at Noon ET: In recognition of #MentalHealthAwarenessMonth, join ARC and Clinical Psychologist Rosalind Kalb, PhD, for a discussion on navigating the many emotions that can arise during the #amyloidosis journey. Register for this #ARCTalks Webinar: us02web.zoom.us/webinar/regi...

Webinar | May 19 | 7 PM ET Those impacted by #V122I #hereditary #ATTR #amyloidosis aren't alone. ARC's second #OurStory webinar brings together a gene carrier, caregiver, and a mental health provider to talk honestly about living with V122I. Register: us02web.zoom.us/webinar/regi...

This is such a lovely initiative!

We’d like to thank Lynne Street for her amazing fundraiser in support of our charity. In memory of her Godmother Sandra, who sadly passed away from #amyloidosis, Lynne abseiled down the National Abseil Centre. She managed to raise £805, 161% beyond her £500 target! www.justgiving.com/page/lynne-s...

The team have already managed to raise over £2100 and you can still donate to their fundraiser here: www.justgiving.com/page/annie-i...

We’re at the Leeds Half Marathon today to support the Dev Netball team who are running to support our charity Amyloidosis UK. Thanks so much to the whole team, you guys are amazing! #amyloidosis #leedshalfmarathon #leeds youtube.com/shorts/ydhd5...

The journey to a diagnosis for Amyloidosis can take years. On #NationalAmyloidosisDay, we’re shedding light on this rare condition where abnormal proteins build up in vital organs like the heart and kidneys. Early detection saves lives. Get the facts: 🔗https://askaboutattr.org/

The Amyloidosis UK team are proud to celebrate Clinical Trials Day on May 20. We join a global wave of appreciation for both the clinical research workforce and the volunteer participants whose partnership makes medical discoveries possible. #ClinicalTrialsDay #CTD2026 #ResearchRising

A professor at Mayo Clinic, Dr. Gertz has authored hundreds of peer reviewed publications and led pivotal research, including clinical trials advancing new therapies for patients with amyloidosis He will deliver the Giampaolo Merlini Lecture at ISA 2026 in Montevideo.

‘Today Team Tett officially kicked off “John’s 400k Challenge.” At 76 and facing a recent diagnosis of Amyloidosis, Dad (& Grandad!) led 10 of us—3 generations of Tetts—across the Wolverhampton Parkrun finish line. Please share our journey to help spread the word!’ www.justgiving.com/page/john-tett

Submit your abstract for the XX International Symposium on Amyloidosis! Share your research, spark new ideas, and connect with experts from around the world. Apply before the upcoming deadline of July 1, 2026. Submit now: www.isaamyloidosis.o...

This #HFAW, we’re supporting the British Society for Heart Failure in highlighting the importance of accurate coding. Consistent heart failure coding across all four nations is essential for early identification, optimal treatment and improved patient outcomes. Learn more: www.bsh.org.uk/hfaw-2026

Your Word of the Day is… Mid-regional Pro-adrenomedullin (MR-proADM) A biomarker produced by the heart in response to stress & disease. In #amyloidosis, recent studies show that elevated levels are associated with greater disease severity & poorer outcomes in ATTR-CM, offering doctors new insight.

We’re proud to support the British Society for Heart Failure this #HFAW. This year’s theme, “Awareness Today, Protection Tomorrow”, highlights the importance of early diagnosis and timely treatment to improve outcomes for people living with heart failure. Explore more here: www.bsh.org.uk/hfaw-2026

Your Word of the Day is… Serum Free Light Chain Assay A highly sensitive blood test that measures the levels of free light chain molecules circulating in the bloodstream. This can be a crucial early tool in diagnosing and monitoring AL amyloidosis.

Earlier recognition can change outcomes in transthyretin amyloidosis. Through CLIMB 2026's expert-led, case-based track, women physicians will build confidence in diagnosing and managing ATTR, which is often underdiagnosed in women. Apply: womenasonepulse.org/... #CLIMB2026 #CardioSky

Tisha Downing pursued genetic testing on her own and discovered she carries #V122I. That moment brought clarity, validation, and a path forward. Join ARC April 23, 7 PM ET for a webinar to learn more about living with #hereditary #ATTR #amyloidosis: us02web.zoom.us/webinar/regi...

Your Word of the Day is… Proteinuria An abnormal condition where detectable levels of protein molecules leak into the urine, indicating that the kidney's filtering system is under stress. In #amyloidosis, proteinuria serves as an important biomarker that signals kidney involvement.

For our HCPs…

Your Word of the Day is… Mass Spectrometry A highly sensitive analytical technique that identifies molecules by measuring their mass & chemical characteristics. In #amyloidosis, it is used on tissue samples to identify which type of amyloid protein is present, enabling more accurate diagnosis…

Your Word of the Day is… Echocardiogram A simple, painless scan that uses sound waves to create detailed images of your heart’s structure and movement. In amyloidosis, it helps doctors spot changes in heart structure and function that may suggest protein build-up.

NB Mark did all of this in memory of his mother Vivienne who sadly passed away in December from a combination of myeloma and amyloidosis.

We’d like to extend an immense THANK YOU to Mark Danzey who just ran the London Landmarks Half Marathon on Sunday in order to raise money for our charity. He’s raised an incredible £18,245 so far, 91% of his £20,000 target! Can anyone help him with the last 9%? www.justgiving.com/page/mark-da...

Free virtual 1.5 #CME on April 16 for clinicians involved in #amyloidosis care! This ARC and @bumedicine.bsky.social program covers early recognition & diagnosis of #ATTR, multimodality imaging, and treatments. HFSA endorsed. Open to all specialties. Register here: cme.bu.edu/arc25

This is amazing!

Your Word of the Day is… Biomarker A naturally occurring molecule, gene, or bodily characteristic that helps identify a disease or physiological process. In #amyloidosis, biomarkers like troponin give doctors a measurable window into how organs are being affected and how well treatment is working.

Better outcomes start with knowing your risk. Join ARC 4/23 at 7PM ET for a webinar on #V122I hereditary #ATTR #amyloidosis. Specialists, a genetic counselor, and a patient will cover what the disease is, genetic testing, treatment, & more. Register at: us02web.zoom.us/webinar/regi...

Your Word of the Day is… Macroglossia A condition where the tongue becomes abnormally enlarged. It can make eating, speaking and swallowing more difficult. Macroglossia is the most common oral manifestation of amyloidosis, occurring most frequently in AL amyloidosis.

Your Word of the Day is… Macroglossia A condition where the tongue becomes abnormally enlarged. It can make eating, speaking and swallowing more difficult. Macroglossia is the most common oral manifestation of amyloidosis, occurring most frequently in AL amyloidosis.

In this video Keith Dares of the Canadian Amyloidosis Support Network provides one of the best explanations of what #amyloidosis is that we’ve ever come across. If you’re struggling to explain it to somebody, keep this video around to share: globalnews.ca/video/117236...

George Symes is running the Paris Marathon 2026 on April 12 to raise money for our charity in memory of his Grandad Bryan, who sadly passed away from #amyloidosis last year. Thank you George, we think you’re amazing! NB George’s JustGiving page is still open: www.justgiving.com/page/george-...

Your Word of the Day is… Congo red stain A special dye used on tissue samples (biopsies) that makes amyloid deposits glow apple-green under polarised light, helping doctors to diagnose amyloidosis.

David & Libby’s Story — Part 3: The impact of an amyloidosis diagnosis. David & Libby share experiences of their loved one’s diagnosis: Libby’s nan who was David’s sister. For Libby, who spent most of her childhood with her nan, it felt like her world was coming to an end. youtu.be/Lgt91UbSCDc

#ARCTalks Webinar | April 14 | Noon ET Learn what’s new in #AL (light chain) #amyloidosis clinical trials and what those updates mean for patients and families during this webinar from Kristen Hsu, ARC’s Executive Director of Research. Register today: us02web.zoom.us/webinar/regi...

David & Libby’s Story — Part 3: The impact of an amyloidosis diagnosis. David & Libby share experiences of their loved one’s diagnosis: Libby’s nan who was David’s sister. For Libby, who spent most of her childhood with her nan, it felt like her world was coming to an end. youtu.be/Lgt91UbSCDc

Your Word of the Day is… Proteomic profiling Proteomic profiling analyses your body’s proteins to build a complete picture of what’s happening at a molecular level. It can help clinicians find answers that other tests may have missed. In amyloidosis, this helps pinpoint exactly which type you have

Your Word of the Day is... Myeloma A blood cancer caused by abnormal plasma cells produced in the bone marrow—the same cells that cause AL amyloidosis, which is why both conditions are treated similarly. Myeloma accounts for 15% of UK blood cancers & 2% of all UK cancers.

Your Word of the Day is… Posology A branch of medical science dealing with the dose or quantity of medicines that needs to be administered to a patient to achieve the desired therapeutic effect.

Registration is now open for the XX International Symposium on Amyloidosis. Join leading experts and innovators for the latest insights, engaging sessions, and valuable connections.