Amyloidosis Support Group of India - ASGI

10/07/2025

Let’s fight together!!!!!

19/09/2024

Dear Respected Members and Wellwishers of ASGI:

It is with immense gratitude and a sense of historic significance that we express our heartfelt thanks to the Director General of Health Services (DGHS) and the Government of India for their prompt attention to the timely appeal regarding the policy development for Amyloidosis management in the country.
1. The recent approval of the minutes of the discussions held on September 6th, 2024, marks a significant milestone in the healthcare landscape of India.

2. We extend our deepest appreciation to the Honorable Prime Minister, the Ministry of Health and Family Welfare, and the entire DGHS team for recognizing the urgent need for a dedicated policy framework for Amyloidosis. 3. The decision to designate the National Centre for Disease Control under DGHS as a pivotal player in the registry of Amyloidosis cases, is comparable with any registry-led Policy options.
3. The mentioning of the allocation of resources for medication procurement for the treatment is remarkable.
4. Priority attached to research by ICMR, signifies a groundbreaking approach towards addressing the complex medical challenges posed due to Amyloidosis
5. We are truly touched by the comprehensive approach outlined by the government, which embraces a multidisciplinary and integrated strategy involving traditional medicine practices. The approach shall be an enabler in setting up large numbers of Centres of Excellence for Amyloidosis Treatment and Management
6. The commitment shown by the Government, towards this endeavour, is commendable, and we are honoured to be part of this transformative journey in ameliorating Amyloidosis.
7. As we stand on the brink of implementing these vital decisions, we pledge our unwavering support and dedication to ensuring the success of this initiative.
8. The support and collaboration of all members and stakeholders of ASGI are crucial as we embark on this collective endeavour.

With profound gratitude and warm regards to all involved, we look forward to the positive impact that this collaboration will bring to the management of Amyloidosis in India.
With Gratitude,

Satish Chandra 🙏
Satish Chandra

07/08/2024

https://x.com/princeamitabh/status/1820787360683962616?s=48&t=siHwt6oz7HodcQIPsbgCDQ

12/07/2024

Urgent: Please Fill Out the ASGI Patient and Caregiver Questionnaire

Dear ASGI Members,

I hope this message finds you well.

We need your help to improve our support services and better understand the needs of our community. Please take a few minutes to fill out our Patient and Caregiver Questionnaire. Your participation is crucial and will significantly aid us in our efforts to support and manage Amyloidosis more effectively.

Survey Form: Patient and Caregiver Questionnaire
https://forms.gle/gJJ57EWzDTZgAp5X8

Additionally, the recording of our recent webinar on Amyloidosis Awareness is now available. You can watch it here: https://youtu.be/NaIxwcsxCfI?si=3BVneJ6Jw8yEhsCx
Thank you for your time and cooperation. Your input is invaluable to us.

Thank you for participating in our AL Amyloidosis Patient Information Questionnaire. The data collected will be used to better understand the epidemiology, treatment success, and patient/caregiver experiences for AL Amyloidosis in India. Your participation is voluntary, and all information will be k...

22/06/2024

FAQ on AL Amyloidosis

What is AL Amyloidosis?
AL Amyloidosis is a rare disease caused by the buildup of abnormal protein deposits, known as amyloid, in various tissues and organs. These deposits can affect the normal function of the heart, kidneys, liver, spleen, and nervous system.

How is AL Amyloidosis diagnosed?
Diagnosis typically involves several tests, including blood and urine tests, biopsies, and imaging studies such as echocardiograms, MRIs, and PET scans. These tests help determine the extent and impact of amyloid deposits in the body.

What do VCD and NTproBNP levels indicate in AL Amyloidosis?
VCD refers to a combination therapy of Velcade (bortezomib), Cyclophosphamide, and Dexamethasone used to treat AL Amyloidosis. NTproBNP is a marker of heart strain used to evaluate cardiac function. Changes in these levels can indicate the effectiveness of treatment and the progression of the disease.

What does a reduction in NTproBNP levels mean?
A decrease in NTproBNP levels suggests improved cardiac function and a positive response to treatment. However, sudden increases may indicate new or worsening heart issues requiring further investigation.

What does the Lambda light chain measurement signify?
Lambda light chains are a component of the abnormal proteins involved in AL Amyloidosis. A decrease in plasma levels indicates a response to combinatorial treatment involving chemotherapy, immunotherapy, and steroids.

What additional tests are planned for monitoring AL Amyloidosis?
Further assessments of cardiac health include Strain Echocardiography, Cardiac MRI, and PET scans. These tests help understand the heart's condition and check for progression or regression of amyloid deposits.

What role do healthcare settings and multidisciplinary teams play?
Leading hospitals in India are striving through a multidisciplinary approach involving hematologists, cardiologists, nephrologists, and other specialists to find sustainable solutions for the patients of Amyloidosis.
Notable Medical Establishments /institutions provide comprehensive care and expertise.

How important is the support from patient groups and caregivers?
Patient groups, caregivers, and platforms like IMAGe in India are vital in promoting awareness about issues and challenges around Amyloidosis. They provide emotional support, share experiences, offer resources, and facilitate quick wins in managing the disease.

What is the focus of ongoing treatment patterns in India?
Ongoing treatment includes adherence to recommended chemotherapy cycles (e.g., VCD), ASCT, Replication of the novel treatment regimens being adopted across the globe, regular monitoring, and further investigations to ensure optimal management of AL Amyloidosis.

How does patient determination impact the management of AL Amyloidosis?
A patient’s commitment to understanding and managing their condition, alongside following medical advice, significantly aids in navigating the complex journey towards better health. With growing focus and deepened engagement of stakeholders, it might bring lots of hope for Amyloidosis patients and caregivers shortly.!!