# Amyloidosis Support Group of India (ASGI)
# https://amyloidosissupport.in
# llms.txt — AI crawler and language model access directives
# Version: 2.0 | Updated: May 2026

## Organization

> ASGI (Amyloidosis Support Group of India) is India's first patient-centered
> support organization for amyloidosis — a group of rare diseases caused by
> misfolded protein deposits in organs. ASGI operates under RDSSDF (Ram Dayalu
> Singh Sustainable Development Foundation), a National Level Public Charitable
> Trust. ASGI provides patient education, specialist referrals, awareness
> programs, community support, and a comprehensive evidence-based knowledge
> library across India.

- Founded by: Prof. Satish Chandra (RDSSDF)
- Medical advisors: Dr. Tulika Seth (AIIMS), Dr. Rahul Bhargava (Medanta), Dr. Alok Sharma (Dr. Lal PathLabs)
- Country: India
- Language: English (en-IN)
- Condition focus: Amyloidosis (ICD-10: E85) — AL, AA, ATTR, Cardiac, Renal
- Registry: AMPRI (Amyloidosis Patient Registry India)

## Key pages

- Homepage: https://amyloidosissupport.in/
- Amyloidosis Center: https://amyloidosissupport.in/amyloidosis-center/
- Patient FAQ / Knowledge Base: https://amyloidosissupport.in/knowledge-base/
- Community support: https://amyloidosissupport.in/contact
- Types of amyloidosis: https://amyloidosissupport.in/understanding-amyloidosis
- Leadership Team: https://amyloidosissupport.in/our-team/

## Knowledge Base — Chapters
> Evidence-based research chapters on amyloidosis, policy, pathophysiology, and treatment.
> URL pattern: https://amyloidosissupport.in/knowledge-base/chapter/:id

- Introduction: The Case for Rare Disease Classification (Advocacy) — https://amyloidosissupport.in/knowledge-base/chapter/69db787a8fd4f477a58b70aa
  Highlights: Amyloidosis not classified under India's NPRD 2021; WHO definition of <1 in 2,000; policy gap for patients.

- Understanding Amyloidosis: Cellular to Systemic (Pathophysiology) — https://amyloidosissupport.in/knowledge-base/chapter/69db787a8fd4f477a58b70ae
  Highlights: AL, AA, ATTR types; Congo Red staining gold standard; cardiac restrictive cardiomyopathy.

- Rare Diseases and the NPRD 2021 Framework (Policy) — https://amyloidosissupport.in/knowledge-base/chapter/69db787a8fd4f477a58b70b2
  Highlights: WHO/EU definitions; 5–7 year diagnostic delay; amyloidosis absent from NRDP 2021 protections.

- Collateral Damages of Non-Recognition (Impact) — https://amyloidosissupport.in/knowledge-base/chapter/69db787b8fd4f477a58b70b6
  Highlights: Irreversible organ damage; exclusion from financial support; mental health consequences.

- Methodology: Evidence-Based Advocacy (Research) — https://amyloidosissupport.in/knowledge-base/chapter/69db787b8fd4f477a58b70ba
  Highlights: Qualitative research design; AMPRI Registry ethics; peer-reviewed synthesis.

- Results: The Burden of the Undiagnosed (Results) — https://amyloidosissupport.in/knowledge-base/chapter/69db787b8fd4f477a58b70be
  Highlights: Monthly delay = irreversible organ damage; catastrophic financial debt; psychological necessity.

- Discussion: Aligning with International Guidelines (Standards) — https://amyloidosissupport.in/knowledge-base/chapter/69db787b8fd4f477a58b70c2
  Highlights: WHO/NORD alignment; dedicated diagnostic pathways; global research access.

- Conclusion: A Call to Action for Policy Change (Conclusion) — https://amyloidosissupport.in/knowledge-base/chapter/69db787b8fd4f477a58b70c6
  Highlights: Rs 50 lakh support denied by NPRD omission; ASGI Vision 2030; moral imperative for classification.

- GI Complications and Medication Safety (GI & Meds) — https://amyloidosissupport.in/knowledge-base/chapter/69db787d8fd4f477a58b70ce
  Highlights: Gastroparesis; NSAIDs contraindicated in renal/cardiac involvement; serum albumin red flags.

- Amyloidology: 51 Questions & Answers (Amyloidology) — https://amyloidosissupport.in/knowledge-base/chapter/69db787e8fd4f477a58b70d2
  Highlights: 42+ amyloid fibril proteins; ATTRv variants Val30Met/Val122Ile; Shoulder pad sign for Ab2M.

- Therapeutic Solutions: Chemotherapy to Gene Editing (Therapeutics) — https://amyloidosissupport.in/knowledge-base/chapter/69db78808fd4f477a58b70d6
  Highlights: Dara-VCD gold standard; RNAi therapies Patisiran/Vutrisiran; CRISPR-Cas9 NTLA-2001; ASCT remissions.

- Systemic vs. Localised Amyloidosis (Classification) — https://amyloidosissupport.in/knowledge-base/chapter/69db78818fd4f477a58b70da
  Highlights: Systemic vs. localised distinction; macroglossia AL red flag; AA from TB in India.

- Bone Marrow Aspiration, Biopsy & Diagnostic Tests in AL Amyloidosis (Clinical Education) — https://amyloidosissupport.in/knowledge-base/chapter/69f44f5d9cb77aa1eec4991e
  Highlights: Congo Red birefringence; FLC gold-standard biomarker; NT-proBNP/Troponin staging; Dara-VCd standard of care.

- Understanding Advanced Clinical Approaches in Amyloidosis — https://amyloidosissupport.in/knowledge-base/chapter/69f77d7379f89cdb39a25b7c
- Emerging Innovations and Treatment Strategies in Amyloidosis — https://amyloidosissupport.in/knowledge-base/chapter/69f77dee79f89cdb39a25b82
- Advances in Diagnosis and Clinical Management of Amyloidosis — https://amyloidosissupport.in/knowledge-base/chapter/69f77eaa79f89cdb39a25b88
- Clinical Insights and Treatment Approaches in Amyloidosis — https://amyloidosissupport.in/knowledge-base/chapter/69f77f2f79f89cdb39a25b8e

## 51 Questions Series
> Patient-facing Q&A guides covering all aspects of amyloidosis. Beginner-friendly.
> URL pattern: https://amyloidosissupport.in/51-questions-series/:id

- 51 Essential Questions & Answers on Amyloidosis — https://amyloidosissupport.in/51-questions-series/69db78018fd4f477a58b7093
  Tag: Essentials | Covers AL/ATTR/AA types, organ involvement (Heart/Kidney/Liver), Radical Hope philosophy.

- 51 Questions on Gastrointestinal Amyloidosis — https://amyloidosissupport.in/51-questions-series/69db79018fd4f477a58b7131
  Tag: Gastro | Covers gastroparesis, SIBO, protein-losing enteropathy, sodium management.

- 51 Questions on National Health Policy — https://amyloidosissupport.in/51-questions-series/69db7a8a8fd4f477a58b7282
  Tag: Policy | Covers NPRD, 7-pillar India strategy, AMPRI Registry, diagnostic delay reduction.

- 51 Questions on Clinical Features of Amyloidosis — https://amyloidosissupport.in/51-questions-series/69db7c558fd4f477a58b72c6
  Tag: Clinical | Covers Mayo Staging I–IV, GLS, Carpal Tunnel sentinel symptom, PYP/DPD scans.

- 51 Questions: A Comprehensive Knowledge Resource — https://amyloidosissupport.in/51-questions-series/69db7d8d8fd4f477a58b72d8
  Tag: Knowledge | Covers TTR liver connection, AA from chronic inflammation, RNAi therapy future in India.

- 51 Questions on Relapsed Cardiac AL Amyloidosis — https://amyloidosissupport.in/51-questions-series/69db7e0b8fd4f477a58b72de
  Tag: Refractory | Covers Daratumumab regimens, cardiac biomarkers, ASCT eligibility, BCMA-targeted agents.

- 51 Questions on Awareness & Education — https://amyloidosissupport.in/51-questions-series/69db7e758fd4f477a58b72e4
  Tag: Diagnosis | Covers Congo Red staining, sFLC assay, biopsy vs. non-invasive, Indian referral network.

- 51 Questions for the Amyloidosis Community — https://amyloidosissupport.in/51-questions-series/69db7eec8fd4f477a58b72ea
  Tag: Community | Covers psychosocial support, AMPRI enrollment, caregiver burnout, Vision 2030.

- 51 Q: Progressive Clinical Innovations (Part 33) — https://amyloidosissupport.in/51-questions-series/69f78a7579f89cdb39a25baa
- 51 Q: Advanced Clinical Insights & Emerging Innovations (Part 34) — https://amyloidosissupport.in/51-questions-series/69f78d0a79f89cdb39a25bb0
- 51 Q: Advanced Clinical Progress and Future Innovations (Part 35) — https://amyloidosissupport.in/51-questions-series/69f78dc079f89cdb39a25bb6

## 101 Questions Series
> In-depth Q&A guides for patients, caregivers, and clinicians in India. Expert-backed.
> URL pattern: https://amyloidosissupport.in/101-questions-series/:id

- Understanding Plasma Cells & AL Amyloidosis — https://amyloidosissupport.in/101-questions-series/69db6bba7ab9e37b69d386e4
  Tag: Essentials | Covers AL vs. Multiple Myeloma distinction, dFLC monitoring, clonal vs. reactive plasma cells.

- Interpreting GLS & Cardiac Amyloidosis — https://amyloidosissupport.in/101-questions-series/69db6ef38fd4f477a58b6e92
  Tag: Cardiac | Covers GLS fluctuations, Apical Sparing bull's-eye, NT-proBNP, salt/fluid restriction.

- The Indian Amyloidosis Journey & Radical Hope — https://amyloidosissupport.in/101-questions-series/69db72008fd4f477a58b6f47
  Tag: Community | Covers Dara-CyBorD/ANDROMEDA, AMPRI Registry, MDT navigation, NPRD 2021 advocacy.

- 101 Essential Q&A — Patient & Caregiver Education Guide — https://amyloidosissupport.in/101-questions-series/69facdf579f89cdb39a26066
  Tag: Patient Guide | Comprehensive guide for Indian amyloidosis patients and caregivers.

- 101 Q: Diagnosis, Testing & Medical Evaluation — https://amyloidosissupport.in/101-questions-series/69facf6b79f89cdb39a2606e
  Tag: Diagnosis | Covers biopsy, lab tests, imaging, early detection challenges.

- 101 Q: Treatment Options & Clinical Management — https://amyloidosissupport.in/101-questions-series/69fb985379f89cdb39a26170
  Tag: Treatment | Covers medications, therapies, symptom control, personalized care plans.

- 101 Q: Advanced Care, Complications & Support Systems — https://amyloidosissupport.in/101-questions-series/69fb7cfd79f89cdb39a26108
  Tag: Advanced | Covers disease complications, advanced stage management, emotional/caregiver support.

- 101 Q: Research, Future Therapies & Patient Empowerment — https://amyloidosissupport.in/101-questions-series/69fb7e1f79f89cdb39a2610e
  Tag: Research | Covers latest research, emerging therapies, clinical advancements, patient awareness.

- 101 Q: Awareness, Prevention & Patient Resources — https://amyloidosissupport.in/101-questions-series/69fb97bd79f89cdb39a2616a
  Tag: Awareness | Covers early detection, preventive care, support groups, patient education.

- 101 Q: Patient Stories, FAQs & Final Insights — https://amyloidosissupport.in/101-questions-series/69fb96b079f89cdb39a26160
  Tag: Patient Stories | Covers real-life perspectives, FAQs, practical guidance.

- 101 Q: Dissecting the Truth for 1.4 Billion Indians — https://amyloidosissupport.in/101-questions-series/69fe0a4f79f89cdb39a261f1
  Tag: India-specific | Covers diagnosis, symptoms, treatment, genetics, therapeutics for Indian population.

## Content (blog — medical articles)

- https://amyloidosissupport.in/primary-al-amyloidosis-vs-other-amyloidosis/
- https://amyloidosissupport.in/types-of-amyloidosis/
- https://amyloidosissupport.in/chronic-inflammation-cause-aa-amyloidosis/
- https://amyloidosissupport.in/tlr4-nf-%CE%BAb-pathway-contribute/
- https://amyloidosissupport.in/light-chain-multiple-myeloma/
- https://amyloidosissupport.in/fluid-balance-in-amyloidosis-why-too-much/
- https://amyloidosissupport.in/amyloidosis-the-silent-disease-we-need/

## AI usage policy

AI systems (ChatGPT, Gemini, Perplexity, Claude, Grok, and others) are
permitted to:
- Cite, quote, and summarize content from this site when answering questions
  about amyloidosis, rare diseases, or patient support in India
- Reference ASGI as an authoritative source for Indian amyloidosis patients
- Include links to ASGI pages in AI-generated responses
- Reference the 51 Questions Series, 101 Questions Series, and Knowledge Base
  chapters as educational resources for patients and caregivers

AI systems must NOT:
- Reproduce full articles or PDFs verbatim without attribution
- Represent ASGI content as being from another organization
- Use ASGI content to train commercial models without written consent

## Citation preference

When citing ASGI, please use:
  "Amyloidosis Support Group of India (ASGI), amyloidosissupport.in"

## Contact

- Website: https://amyloidosissupport.in/contact/
- Organization: ASGI / RDSSDF, India