Amyloidosis Research Consortium
@amyloidosis.bsky.social
ARC is accelerating the development of and access to new and innovative treatments for systemic #amyloidosis
Thirty years ago ARC founder Isabelle Lousada's life was transformed. In 1995 she earned her master’s in architecture, married her husband, and days later was diagnosed with a life-threatening illness: #amyloidosis.
Read her story: arci.org/isabellestory/
Read her story: arci.org/isabellestory/
From Patient to Advocate: My Amyloidosis Story
Thirty years ago, 1995, was the biggest year of my life. I completed my master’s in architecture. I met and married my husband. And I was diagnosed with amyloidosis.
arci.org
November 20, 2025 at 4:40 PM
Thirty years ago ARC founder Isabelle Lousada's life was transformed. In 1995 she earned her master’s in architecture, married her husband, and days later was diagnosed with a life-threatening illness: #amyloidosis.
Read her story: arci.org/isabellestory/
Read her story: arci.org/isabellestory/
The Amyloidosis Research Consortium (ARC) is Shining a Light on #amyloidosis — driving discovery, supporting patients and their families, and investing in the future of expert care.
With your support we can do even more: arci.org/givenow
With your support we can do even more: arci.org/givenow
November 13, 2025 at 10:40 PM
The Amyloidosis Research Consortium (ARC) is Shining a Light on #amyloidosis — driving discovery, supporting patients and their families, and investing in the future of expert care.
With your support we can do even more: arci.org/givenow
With your support we can do even more: arci.org/givenow
10 years ago, ARC was founded to improve and extend the lives of people living with #amyloidosis.
Thank you to everyone whose support sustains our work and helps drive progress in care and research.
See your impact at work: arci.org/ImpactAtWork2025
Thank you to everyone whose support sustains our work and helps drive progress in care and research.
See your impact at work: arci.org/ImpactAtWork2025
November 6, 2025 at 6:55 PM
10 years ago, ARC was founded to improve and extend the lives of people living with #amyloidosis.
Thank you to everyone whose support sustains our work and helps drive progress in care and research.
See your impact at work: arci.org/ImpactAtWork2025
Thank you to everyone whose support sustains our work and helps drive progress in care and research.
See your impact at work: arci.org/ImpactAtWork2025
The 2025 annual #AmyloidosisForum was the most well attended meeting yet.
Discussions covered:
• Current Challenges & Innovative Solutions
• Imaging Standardization
• Prognostic Factors
• Endpoint Development
Watch the recordings here: amyloidosisforum.org/2025-meeting...
Discussions covered:
• Current Challenges & Innovative Solutions
• Imaging Standardization
• Prognostic Factors
• Endpoint Development
Watch the recordings here: amyloidosisforum.org/2025-meeting...
2025 Amyloidosis Forum Annual Meeting
This meeting detailed the Amyloidosis Forum working groups' projects to accelerate drug development in AL and ATTR Amyloidosis
amyloidosisforum.org
November 5, 2025 at 2:51 PM
The 2025 annual #AmyloidosisForum was the most well attended meeting yet.
Discussions covered:
• Current Challenges & Innovative Solutions
• Imaging Standardization
• Prognostic Factors
• Endpoint Development
Watch the recordings here: amyloidosisforum.org/2025-meeting...
Discussions covered:
• Current Challenges & Innovative Solutions
• Imaging Standardization
• Prognostic Factors
• Endpoint Development
Watch the recordings here: amyloidosisforum.org/2025-meeting...
The #ATTR #amyloidosis MAGNITUDE clinical trials have been temporarily put on hold by @intelliatx and the @US_FDA.
Learn more: arci.org/magnitudehold/
Learn more: arci.org/magnitudehold/
ATTR Amyloidosis MAGNITUDE Clinical Trials Temporarily on Hold
On October 27, 2025, Intellia Therapeutics temporarily paused enrollment in its MAGNITUDE and MAGNITUDE-2 trials after one participant ...
arci.org
October 30, 2025 at 7:48 PM
The #ATTR #amyloidosis MAGNITUDE clinical trials have been temporarily put on hold by @intelliatx and the @US_FDA.
Learn more: arci.org/magnitudehold/
Learn more: arci.org/magnitudehold/
Good morning! Are you ready to hear from clinicians, drug developers, and regulatory members discuss the most important topics facing #amyloidosis?
Tune in to the #AmyloidosisForum online any time between 8-4 today for some important conversations! amyloidosisforum.org/2025-meeting/
Tune in to the #AmyloidosisForum online any time between 8-4 today for some important conversations! amyloidosisforum.org/2025-meeting/
October 22, 2025 at 2:06 PM
Good morning! Are you ready to hear from clinicians, drug developers, and regulatory members discuss the most important topics facing #amyloidosis?
Tune in to the #AmyloidosisForum online any time between 8-4 today for some important conversations! amyloidosisforum.org/2025-meeting/
Tune in to the #AmyloidosisForum online any time between 8-4 today for some important conversations! amyloidosisforum.org/2025-meeting/
Don't miss a special ARC Talks webinar for #Caregivers & #CarePartners, Oct 15 at Noon ET!
Hear practical advice, self-care tips, and real-life strategies to help make daily life a little easier for both you and the person you care about.
Register today: us02web.zoom.us/webinar/regi...
Hear practical advice, self-care tips, and real-life strategies to help make daily life a little easier for both you and the person you care about.
Register today: us02web.zoom.us/webinar/regi...
October 8, 2025 at 4:53 PM
Don't miss a special ARC Talks webinar for #Caregivers & #CarePartners, Oct 15 at Noon ET!
Hear practical advice, self-care tips, and real-life strategies to help make daily life a little easier for both you and the person you care about.
Register today: us02web.zoom.us/webinar/regi...
Hear practical advice, self-care tips, and real-life strategies to help make daily life a little easier for both you and the person you care about.
Register today: us02web.zoom.us/webinar/regi...
Know an #amyloidosis patient who could benefit from connecting with those who know what they're going through?
Our PEER Link program connects people with trained peer mentors for 1:1 guidance and encouragement.
Connect your patients to a PEER Today: arci.org/peer-link
Our PEER Link program connects people with trained peer mentors for 1:1 guidance and encouragement.
Connect your patients to a PEER Today: arci.org/peer-link
August 20, 2025 at 5:13 PM
Know an #amyloidosis patient who could benefit from connecting with those who know what they're going through?
Our PEER Link program connects people with trained peer mentors for 1:1 guidance and encouragement.
Connect your patients to a PEER Today: arci.org/peer-link
Our PEER Link program connects people with trained peer mentors for 1:1 guidance and encouragement.
Connect your patients to a PEER Today: arci.org/peer-link
Over the past decade ARC has driven bold science, sparked critical breakthroughs, and brought new hope to people living with #amyloidosis.
Donate today to support the next 10 years of progress: donate.arci.org/campaign/701...
Donate today to support the next 10 years of progress: donate.arci.org/campaign/701...
Donate to Help Us Celebrate 10 Years of ARC!
Support our cause by donating to Help Us Celebrate 10 Years of ARC!.
donate.arci.org
August 8, 2025 at 6:09 PM
Over the past decade ARC has driven bold science, sparked critical breakthroughs, and brought new hope to people living with #amyloidosis.
Donate today to support the next 10 years of progress: donate.arci.org/campaign/701...
Donate today to support the next 10 years of progress: donate.arci.org/campaign/701...
Alison was a nurse before becoming an #AL #amyloidosis patient. ARC gave her clarity, support, and hope. Now her legacy gift ensures others get the same.
This #MakeAWillMonth, consider the impact your gift can have.
Learn more of Alison's story: arci.org/a-legacy-of-...
This #MakeAWillMonth, consider the impact your gift can have.
Learn more of Alison's story: arci.org/a-legacy-of-...
A Legacy of Hope: Alison’s Story
It wasn’t until she returned home (with symptoms that wouldn't improve) that she realized something more serious was happening ...
arci.org
August 7, 2025 at 6:55 PM
Alison was a nurse before becoming an #AL #amyloidosis patient. ARC gave her clarity, support, and hope. Now her legacy gift ensures others get the same.
This #MakeAWillMonth, consider the impact your gift can have.
Learn more of Alison's story: arci.org/a-legacy-of-...
This #MakeAWillMonth, consider the impact your gift can have.
Learn more of Alison's story: arci.org/a-legacy-of-...
🎉 ARC is 10!
We’ve helped support thousands of #amyloidosis patients, educated HCPs, and helped spur progress in drug development.
Thanks to everyone we’ve partnered with over our first 10 years!
See our impact & support the next decade: arci.org/anniversary/
#ARC10Years
We’ve helped support thousands of #amyloidosis patients, educated HCPs, and helped spur progress in drug development.
Thanks to everyone we’ve partnered with over our first 10 years!
See our impact & support the next decade: arci.org/anniversary/
#ARC10Years
August 5, 2025 at 2:49 PM
🎉 ARC is 10!
We’ve helped support thousands of #amyloidosis patients, educated HCPs, and helped spur progress in drug development.
Thanks to everyone we’ve partnered with over our first 10 years!
See our impact & support the next decade: arci.org/anniversary/
#ARC10Years
We’ve helped support thousands of #amyloidosis patients, educated HCPs, and helped spur progress in drug development.
Thanks to everyone we’ve partnered with over our first 10 years!
See our impact & support the next decade: arci.org/anniversary/
#ARC10Years
Join ARC + the American Association for Hand Surgery for a CME webinar Aug 5 at 8PM ET.
Hear from Dr. Schulman, diagnosed after a carpal tunnel biopsy, plus experts on when to biopsy & what to watch for.
👉 us06web.zoom.us/meeting/regi...
#CME #RareDisease
Hear from Dr. Schulman, diagnosed after a carpal tunnel biopsy, plus experts on when to biopsy & what to watch for.
👉 us06web.zoom.us/meeting/regi...
#CME #RareDisease
July 25, 2025 at 9:16 PM
Join ARC + the American Association for Hand Surgery for a CME webinar Aug 5 at 8PM ET.
Hear from Dr. Schulman, diagnosed after a carpal tunnel biopsy, plus experts on when to biopsy & what to watch for.
👉 us06web.zoom.us/meeting/regi...
#CME #RareDisease
Hear from Dr. Schulman, diagnosed after a carpal tunnel biopsy, plus experts on when to biopsy & what to watch for.
👉 us06web.zoom.us/meeting/regi...
#CME #RareDisease
📢 Don't miss our #ARCTALKS webinar next week!
ARC’s Kristen Hsu will share the latest updates on the #ATTR #amyloidosis clinical trial landscape, plus what’s ahead for research in the area.
🗓️ Register now: us02web.zoom.us/webinar/regi...
#ClinicalTrials #RareDisease
ARC’s Kristen Hsu will share the latest updates on the #ATTR #amyloidosis clinical trial landscape, plus what’s ahead for research in the area.
🗓️ Register now: us02web.zoom.us/webinar/regi...
#ClinicalTrials #RareDisease
July 23, 2025 at 7:04 PM
📢 Don't miss our #ARCTALKS webinar next week!
ARC’s Kristen Hsu will share the latest updates on the #ATTR #amyloidosis clinical trial landscape, plus what’s ahead for research in the area.
🗓️ Register now: us02web.zoom.us/webinar/regi...
#ClinicalTrials #RareDisease
ARC’s Kristen Hsu will share the latest updates on the #ATTR #amyloidosis clinical trial landscape, plus what’s ahead for research in the area.
🗓️ Register now: us02web.zoom.us/webinar/regi...
#ClinicalTrials #RareDisease
🎉 Congrats to the first ARC #ClinicalFellowship awardees! Thank you for helping shape the next generation of #amyloidosis experts. Together, we're building a brighter future for patients. 💙
Learn more: arci.org/fellowship/
Learn more: arci.org/fellowship/
July 22, 2025 at 5:52 PM
🎉 Congrats to the first ARC #ClinicalFellowship awardees! Thank you for helping shape the next generation of #amyloidosis experts. Together, we're building a brighter future for patients. 💙
Learn more: arci.org/fellowship/
Learn more: arci.org/fellowship/
BREAKING NEWS: Phase 3 CARES clinical trial did not meet its primary endpoint. Alexion, AstraZeneca Rare Disease, announces no significant improvement in overall survival, but see signs the drug may help a specific subgroup of #AL #amyloidosis patients.
Learn More: arci.org/negative-ans...
Learn More: arci.org/negative-ans...
Phase 3 CARES Clinical Trial Fails to Meet Primary Endpoint
Sadly, anselamimab did not show a significant benefit to helping patients live longer during the study period. Though the endpoints of ...
arci.org
July 17, 2025 at 12:33 PM
BREAKING NEWS: Phase 3 CARES clinical trial did not meet its primary endpoint. Alexion, AstraZeneca Rare Disease, announces no significant improvement in overall survival, but see signs the drug may help a specific subgroup of #AL #amyloidosis patients.
Learn More: arci.org/negative-ans...
Learn More: arci.org/negative-ans...
Can #AI help uncover #CardiacAmyloidosis earlier?
A new white paper is out now featuring insights from experts across medicine, AI, & advocacy.
Download Here: arci.org/aipapermay2025
#AI #Amyloidosis #RareDisease
A new white paper is out now featuring insights from experts across medicine, AI, & advocacy.
Download Here: arci.org/aipapermay2025
#AI #Amyloidosis #RareDisease
June 23, 2025 at 6:21 PM
Can #AI help uncover #CardiacAmyloidosis earlier?
A new white paper is out now featuring insights from experts across medicine, AI, & advocacy.
Download Here: arci.org/aipapermay2025
#AI #Amyloidosis #RareDisease
A new white paper is out now featuring insights from experts across medicine, AI, & advocacy.
Download Here: arci.org/aipapermay2025
#AI #Amyloidosis #RareDisease
Thanks to everyone who visited ARC's exhibit booth during the AAHFN 21st Annual Meeting last week!
Spreading awareness of #amyloidosis and ARC's programs and resources is a critical piece of improving the lives of those affected by amyloidosis. #AAHFN2025
Spreading awareness of #amyloidosis and ARC's programs and resources is a critical piece of improving the lives of those affected by amyloidosis. #AAHFN2025
June 17, 2025 at 7:37 PM
Thanks to everyone who visited ARC's exhibit booth during the AAHFN 21st Annual Meeting last week!
Spreading awareness of #amyloidosis and ARC's programs and resources is a critical piece of improving the lives of those affected by amyloidosis. #AAHFN2025
Spreading awareness of #amyloidosis and ARC's programs and resources is a critical piece of improving the lives of those affected by amyloidosis. #AAHFN2025
New in JAHA: ASPIRE + expert collaborators outline how #AI could help detect #CardiacAmyloidosis earlier. Strong science. Real-world urgency.
Read more: www.ahajournals.org/doi/10.1161/...
#Amyloidosis #RareDisease #JAHA_AHA
Read more: www.ahajournals.org/doi/10.1161/...
#Amyloidosis #RareDisease #JAHA_AHA
June 11, 2025 at 6:00 PM
New in JAHA: ASPIRE + expert collaborators outline how #AI could help detect #CardiacAmyloidosis earlier. Strong science. Real-world urgency.
Read more: www.ahajournals.org/doi/10.1161/...
#Amyloidosis #RareDisease #JAHA_AHA
Read more: www.ahajournals.org/doi/10.1161/...
#Amyloidosis #RareDisease #JAHA_AHA
📆 📷 June 10 | 12PM ET | #ARCTalks Webinar: #ATTR Cardiac Treatments
Hear Jan Griffin, #amyloidosis cardiologist at the Medical University of South Carolina, discuss how ATTR affects the heart and explore the evolution of treatments for ATTR-CM.
Register Today: us02web.zoom.us/webinar/regi...
Hear Jan Griffin, #amyloidosis cardiologist at the Medical University of South Carolina, discuss how ATTR affects the heart and explore the evolution of treatments for ATTR-CM.
Register Today: us02web.zoom.us/webinar/regi...
June 9, 2025 at 2:20 PM
📆 📷 June 10 | 12PM ET | #ARCTalks Webinar: #ATTR Cardiac Treatments
Hear Jan Griffin, #amyloidosis cardiologist at the Medical University of South Carolina, discuss how ATTR affects the heart and explore the evolution of treatments for ATTR-CM.
Register Today: us02web.zoom.us/webinar/regi...
Hear Jan Griffin, #amyloidosis cardiologist at the Medical University of South Carolina, discuss how ATTR affects the heart and explore the evolution of treatments for ATTR-CM.
Register Today: us02web.zoom.us/webinar/regi...
Would you like support from someone who understands?
ARC’s Patient Education & Empowerment Resource (PEER) Link is a one-to-one program connecting #amyloidosis patients and caregivers with a trained peer mentor around shared experiences.
Apply today: arci.org/peer-link/
ARC’s Patient Education & Empowerment Resource (PEER) Link is a one-to-one program connecting #amyloidosis patients and caregivers with a trained peer mentor around shared experiences.
Apply today: arci.org/peer-link/
June 4, 2025 at 5:48 PM
Would you like support from someone who understands?
ARC’s Patient Education & Empowerment Resource (PEER) Link is a one-to-one program connecting #amyloidosis patients and caregivers with a trained peer mentor around shared experiences.
Apply today: arci.org/peer-link/
ARC’s Patient Education & Empowerment Resource (PEER) Link is a one-to-one program connecting #amyloidosis patients and caregivers with a trained peer mentor around shared experiences.
Apply today: arci.org/peer-link/
Breaking News: Prothena Corporation has announced that the Phase 3 AFFIRM-AL clinical trial evaluating birtamimab in patients with Mayo Stage IV AL #amyloidosis failed to meet its primary endpoint.
Learn more: arci.org/negative-aff...
Learn more: arci.org/negative-aff...
Prothena Announces Negative AFFIRM-AL Trial Results
The company announced a failure to achieve the main outcomes of its clinical trial. The results measured did not show the level of benefit to participants needed to continue in the development process...
arci.org
May 23, 2025 at 9:26 PM
Breaking News: Prothena Corporation has announced that the Phase 3 AFFIRM-AL clinical trial evaluating birtamimab in patients with Mayo Stage IV AL #amyloidosis failed to meet its primary endpoint.
Learn more: arci.org/negative-aff...
Learn more: arci.org/negative-aff...
📆 📷 Starting Now!
#ARCTalks Webinar: Understanding Living with Amyloidosis
ARC Senior Research Manager, Sabrina Rebello, presents an in-depth overview of key insights from our Annual Community Survey.
Join Us: arci.org/event/arc-ta...
#ARCTalks Webinar: Understanding Living with Amyloidosis
ARC Senior Research Manager, Sabrina Rebello, presents an in-depth overview of key insights from our Annual Community Survey.
Join Us: arci.org/event/arc-ta...
ARC Talks Webinar | Understanding Living with Amyloidosis
ARC's Senior Research Manager, Sabrina Rebello, for an in-depth overview of key insights from our Annual Community Survey. This webinar ...
arci.org
May 14, 2025 at 4:06 PM
📆 📷 Starting Now!
#ARCTalks Webinar: Understanding Living with Amyloidosis
ARC Senior Research Manager, Sabrina Rebello, presents an in-depth overview of key insights from our Annual Community Survey.
Join Us: arci.org/event/arc-ta...
#ARCTalks Webinar: Understanding Living with Amyloidosis
ARC Senior Research Manager, Sabrina Rebello, presents an in-depth overview of key insights from our Annual Community Survey.
Join Us: arci.org/event/arc-ta...
📢 For many living with #amyloidosis, Medicaid is the only way they can access treatment, specialists, and hope.
Your help is needed to tell Members of Congress to vote NO on cutting Medicaid coverage for those living with a #RareDisease and their families. rarediseases.org/driving-poli...
Your help is needed to tell Members of Congress to vote NO on cutting Medicaid coverage for those living with a #RareDisease and their families. rarediseases.org/driving-poli...
Take Action - National Organization for Rare Disorders
rarediseases.org
May 13, 2025 at 7:23 PM
📢 For many living with #amyloidosis, Medicaid is the only way they can access treatment, specialists, and hope.
Your help is needed to tell Members of Congress to vote NO on cutting Medicaid coverage for those living with a #RareDisease and their families. rarediseases.org/driving-poli...
Your help is needed to tell Members of Congress to vote NO on cutting Medicaid coverage for those living with a #RareDisease and their families. rarediseases.org/driving-poli...
In the first few months of 2025 a series of federal policy changes to the NIH, FDA, and other key agencies have significantly shifted the landscape of biomedical research funding in the U.S.
Stay informed about what’s happening and how we're responding: arci.org/uspolicy/
Stay informed about what’s happening and how we're responding: arci.org/uspolicy/
Amyloidosis and US Federal Policy - Amyloidosis Research Consortium
At the Amyloidosis Research Consortium (ARC), we are actively mobilizing to meet this moment in US Federal Policy.
arci.org
May 13, 2025 at 3:06 PM
In the first few months of 2025 a series of federal policy changes to the NIH, FDA, and other key agencies have significantly shifted the landscape of biomedical research funding in the U.S.
Stay informed about what’s happening and how we're responding: arci.org/uspolicy/
Stay informed about what’s happening and how we're responding: arci.org/uspolicy/
📢 [New Publication] Evaluating the validity, reliability, and structure of our #ATTR #QOL patient-reported outcome measure!
With strong psychometric support, the ATTR-QOL helps capture the real-life impact of this complex disease.
📄 Read More: jpro.springeropen.com/articles/10....
With strong psychometric support, the ATTR-QOL helps capture the real-life impact of this complex disease.
📄 Read More: jpro.springeropen.com/articles/10....
Reliability and validity of the Transthyretin Amyloidosis – Quality of Life (ATTR-QOL) Questionnaire impact scales - Journal of Patient-Reported Outcomes
Background The diversity of disease phenotypes associated with transthyretin (ATTR) amyloidosis poses challenges for measurement of health outcomes. The Transthyretin Amyloidosis – Quality of Life (AT...
jpro.springeropen.com
April 30, 2025 at 1:57 PM
📢 [New Publication] Evaluating the validity, reliability, and structure of our #ATTR #QOL patient-reported outcome measure!
With strong psychometric support, the ATTR-QOL helps capture the real-life impact of this complex disease.
📄 Read More: jpro.springeropen.com/articles/10....
With strong psychometric support, the ATTR-QOL helps capture the real-life impact of this complex disease.
📄 Read More: jpro.springeropen.com/articles/10....