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Genetic and Rare Diseases Information Center (GARD)


Other names people use for this condition
  • Purpura, Schonlein-Henoch
  • Anaphylactoid purpura
  • Vascular purpura
  • Henoch Schonlein purpura
Home > Rare Diseases and Related Terms > Henoch-Schonlein purpura



Henoch-Schonlein purpura
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Henoch-Schonlein purpura (HSP) is a disease that involves purple spots on the skin (purpura), joint pain, gastrointestinal problems, and glomerulonephritis (a type of kidney disorder).[1] While the cause of this condition is not fully understood, it may develop as an immune response to an infection.[1][2] HSP is usually seen in children, but it may affect people of any age.[2] Most cases go away on their own without treatment.[1] For those cases which require treatment, the main goal is to relieve symptoms such as joint pain, abdominal pain, or swelling. In many cases, over-the-counter medicines can be used. In some patients with severe arthritis, prednisone, a steroid medicine, may be prescribed.[1][2]


References
  1. Borigini MJ. Henoch-Schonlein purpura. MedlinePlus. 2009 Available at: http://www.nlm.nih.gov/medlineplus/ency/article/000425.htm. Accessed August 31, 2010.
  2. Henoch-Schonlein Purpura. The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC). 2006 Available at: http://kidney.niddk.nih.gov/kudiseases/pubs/HSP/. Accessed August 31, 2010.
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More Detailed Information (Found 7 resources)
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  • General

    • The American Academy of Family Physicians provides information about Henoch-Schonlein purpura. Click on the link to view this information. 
    • eMedicine has 3 articles on this topic from the perspective of Pediatrics, Dermatology and Emergency Medicine. You may need to register to view the information online, but registration is free. Click on the links above to view the articles from this medical reference Web site.
    • MedlinePlus, a Web site designed by the National Library of Medicine to help you research your health questions, provides more information about this topic. Click on the link to view this information.
    • The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), part of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), conducts and supports research on a broad spectrum of diseases affecting public health. Click on the link to view information on this topic.
    • The National Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. Click on the link to view information on this topic.
    • Orphanet is a database dedicated to information on rare diseases and orphan drugs.  Access to this database is free of charge.  Click on the link to read information on this topic.
    • PubMed is a searchable database of medical literature and lists journal articles that discuss Henoch-Schonlein purpura. Click on the link to view a sample search on this topic.
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Organizations (Found 8 resources)
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Services (Found 2 resources)
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    • Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find an Expert fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more.

  • Parent Resources

    • The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.
 
Scientific Conferences (Found 3 resources)
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  • Past Conferences

    • RDCRN 3rd Conference on Clinical Research for Rare Diseases, October 2, 2012
      Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD
      Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: direct instruction of trainees and new investigators in rare disease research methodology; development of a reusable curriculum/syllabus on rare disease research methodology; and stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases.
    • Pediatric Rheumatology Research Annual Scientific Meeting, April 20, 2012 - April 22, 2012
      Location: TBA
      Description: The specific objectives of this scientific meeting are: 1. To advance our understanding of the pathogenesis (immune, genetic, epigenetic and inflammatory), epidemiology, and current and innovative therapeutic approaches in pediatric rheumatic diseases 2. To provide a forum for development of collaborations and mentoring for the pediatric rheumatology research community with special attention to young investigators. 3. To provide training and education in major areas relevant to pediatric rheumatology research and the conduct of clinical research 4. To integrate pediatric rheumatology research coordinators into the advancement of the CARRA research strategy and the development of specific research projects by incorporating representatives of the CARRA Research Coordinator Network into all CARRA research working groups
    • VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases , March 18, 2010 - March 20, 2010
      Location: Palais Rouge Convention Center, Palermo, Buenos Aires
      Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities.
 
Clinical Trials & Research (Found 4 resources)
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    • ClinicalTrials.gov lists trials that are studying or have studied Henoch-Schonlein purpura. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
    • NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.
    • The Research Portfolio Online Reporting Tool (RePORT) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, click on the link and enter the disease name in the "Terms Search" box. Then click "Submit Query".
      Link: http://projectreporter.nih.gov/reporter.cfm
  • Patient Registry

    • ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Advancing Translational Sciences.

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