A disorder characterized by the localized or diffuse accumulation of amyloid protein in various anatomic sites. It may be primary, due to clonal plasma cell proliferations; secondary, due to long stan...
Comprehensive, easy-to-understand information about this condition
How we create this content →The limited documentation surrounding amyloidosis can be frustrating. This condition affects a relatively small number of individuals, making it difficult to conduct large-scale clinical studies. Additionally, the complexity of amyloidosis, with its various forms and potential organ involvement, complicates systematic characterization. Researchers are actively working to better understand this disease, and your experience is shared by many others navigating similar challenges.
To navigate your journey with amyloidosis, consider consulting with a hematologist or a specialist in rare diseases who has experience with amyloidosis. You can also connect with patient organizations such as the Amyloidosis Research Consortium (ARC) at https://arci.org and the Amyloidosis Foundation at https://amyloidosis.org for support and resources. Participating in a patient registry or natural history study may provide additional insights into your condition and contribute to research efforts.
Currently, there are 372 active clinical trials related to amyloidosis, which offer hope for new treatment options and insights into the disease. While there are no orphan drugs designated for amyloidosis, the ongoing trials may lead to advancements in understanding and managing the condition. You can explore these trials further at ClinicalTrials.gov by searching for 'amyloidosis'.
Actionable guidance for navigating care for amyloidosis
To navigate your journey with amyloidosis, consider consulting with a hematologist or a specialist in rare diseases who has experience with amyloidosis. You can also connect with patient organizations such as the Amyloidosis Research Consortium (ARC) at https://arci.org and the Amyloidosis Foundation at https://amyloidosis.org for support and resources. Participating in a patient registry or natural history study may provide additional insights into your condition and contribute to research efforts.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the amyloidosis community
Helpful links for rare disease information and support
The limited documentation surrounding amyloidosis can be frustrating. This condition affects a relatively small number of individuals, making it difficult to conduct large-scale clinical studies. Additionally, the complexity of amyloidosis, with its various forms and potential organ involvement, complicates systematic characterization. Researchers are actively working to better understand this disease, and your experience is shared by many others navigating similar challenges.
To navigate your journey with amyloidosis, consider consulting with a hematologist or a specialist in rare diseases who has experience with amyloidosis. You can also connect with patient organizations such as the Amyloidosis Research Consortium (ARC) at https://arci.org and the Amyloidosis Foundation at https://amyloidosis.org for support and resources. Participating in a patient registry or natural history study may provide additional insights into your condition and contribute to research efforts.
Currently, there are 372 active clinical trials related to amyloidosis, which offer hope for new treatment options and insights into the disease. While there are no orphan drugs designated for amyloidosis, the ongoing trials may lead to advancements in understanding and managing the condition. You can explore these trials further at ClinicalTrials.gov by searching for 'amyloidosis'.
Actionable guidance for navigating care for amyloidosis
To navigate your journey with amyloidosis, consider consulting with a hematologist or a specialist in rare diseases who has experience with amyloidosis. You can also connect with patient organizations such as the Amyloidosis Research Consortium (ARC) at https://arci.org and the Amyloidosis Foundation at https://amyloidosis.org for support and resources. Participating in a patient registry or natural history study may provide additional insights into your condition and contribute to research efforts.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the amyloidosis community
Helpful links for rare disease information and support
The limited documentation surrounding amyloidosis can be frustrating. This condition affects a relatively small number of individuals, making it difficult to conduct large-scale clinical studies. Additionally, the complexity of amyloidosis, with its various forms and potential organ involvement, complicates systematic characterization. Researchers are actively working to better understand this disease, and your experience is shared by many others navigating similar challenges.
To navigate your journey with amyloidosis, consider consulting with a hematologist or a specialist in rare diseases who has experience with amyloidosis. You can also connect with patient organizations such as the Amyloidosis Research Consortium (ARC) at https://arci.org and the Amyloidosis Foundation at https://amyloidosis.org for support and resources. Participating in a patient registry or natural history study may provide additional insights into your condition and contribute to research efforts.
Currently, there are 372 active clinical trials related to amyloidosis, which offer hope for new treatment options and insights into the disease. While there are no orphan drugs designated for amyloidosis, the ongoing trials may lead to advancements in understanding and managing the condition. You can explore these trials further at ClinicalTrials.gov by searching for 'amyloidosis'.
Actionable guidance for navigating care for amyloidosis
To navigate your journey with amyloidosis, consider consulting with a hematologist or a specialist in rare diseases who has experience with amyloidosis. You can also connect with patient organizations such as the Amyloidosis Research Consortium (ARC) at https://arci.org and the Amyloidosis Foundation at https://amyloidosis.org for support and resources. Participating in a patient registry or natural history study may provide additional insights into your condition and contribute to research efforts.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the amyloidosis community
Helpful links for rare disease information and support
Clinical profile data for this condition is not yet available. Phenotype information may still be loading below.
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Feb 1, 2026
Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
European rare disease database
Genetic and Rare Diseases Info Center
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.