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Amyloidosis

What is Amyloidosis?

Amyloidosis is a rare bone marrow disease characterized by the buildup of amyloid proteins in the organs.

 

Amyloidosis is a rare bone marrow disease characterized by the buildup of amyloid proteins in the organs.
Acknowledgement of Amyloidosis has not been added yet.
Prevalence Information of Amyloidosis has not been added yet.
Synonyms for Amyloidosis has not been added yet.
Cause of Amyloidosis has not been added yet.
Swelling of ankles and legs, Weakness, Weight loss, Shortness of breath, Numbness or tingling in hands or feet, Diarrhea, Severe fatigue, enlarged tongue, Skin changes, irregular heartbeat, Difficulty swallowing
Amyloid can be diagnosed by microscopic examination of affected tissue.
Diagnostic tests of Amyloidosis has not been added yet
Treatments of Amyloidosis has not been added yet.
Prognosis of Amyloidosis has not been added yet.
Tips or Suggestions of Amyloidosis has not been added yet.
References of Amyloidosis has not been added yet.
Amyloidosis Foundation 'Run for Your Life' Created by RareshareTeam
Last updated 18 Sep 2018, 11:19 PM

Posted by RareshareTeam
18 Sep 2018, 11:19 PM

The Amyloidosis Foundation's annual 'Run for Your Life' is less than a month away!  This important fundraiser will raise money for medical research and patient programs.  Visit https://secure.qgiv.com/for/nuffgh/event/792143 to register for the October 13th event.

Light chain deposition disease Created by barberjp
Last updated 8 Jan 2010, 10:11 PM

Posted by barberjp
20 Jul 2009, 09:01 PM

Hi Some physicians conceptualize light chain deposition disease or disorder LCDD as a form of amyloidosis. If any member of this community know somebody who has LCDD, sometimes the disease is called kappa light chain deposition disease, please have them join the light chain deposition disease community Thanks B

Community External News Link
Title Date Link
UPCOMING EVENT: The Amyloidosis Foundation's Annual 'Run for Your Life' 10/13/2018
Community Resources
Title Description Date Link
Amyloidosis Foundation

The website of the Amyloidosis Foundation.

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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Amyloidosis Foundation 'Run for Your Life'

Created by RareshareTeam | Last updated 18 Sep 2018, 11:19 PM

Light chain deposition disease

Created by barberjp | Last updated 8 Jan 2010, 10:11 PM


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