This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.
| Medical Terms | Other Names | Learn More: HPO ID |
|---|---|---|
| Percent of people who have these symptoms is not available through HPO | ||
| Abnormal cranial nerve morphology | 0001291 | |
| Adult onset |
Symptoms begin in adulthood
|
0003581 |
| Amyloidosis | 0011034 | |
| 0000006 | ||
| Cutaneous amyloidosis | 0012309 | |
| Cutis laxa | 0000973 | |
| Lattice corneal dystrophy | 0001149 | |
| Pruritus |
Itching
Itchy skin
Skin itching
[ more ]
|
0000989 |
If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.
If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.
You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
The XVIth International Symposium on Amyloidosis
May 31, 2017
XIV International Symposium on Amyloidosis
Sunday, April 27, 2014 -
Friday, May 2, 2014
Location:
Indianapolis,
Indiana
Description: One important goal is to foster interactions between investigators who do not meet regularly outside of this event. Through this conference, experts can share unpublished scientific and clinical information about rare diseases that are hard to treat. A second crucial goal is to stimulate interest in a new generation of investigators by providing generous support for at least 10 junior-level researchers to attend the meeting, giving out awards for the most promising clinical research, the best poster, and the best oral presentation by young investigators, and providing childcare options.
Contact: Rebekah S. Rasooly, Ph.D.(301) 594-6007rrl85i@nih.gov
Co-funding Institute(s): National Institute of Diabetes and Digestive and Kidney Diseases, Office of Rare Diseases Research
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