Atrophoderma of Pierini and Pasini

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Genetic and Rare Diseases Information Center (GARD)

Idiopathic atrophoderma of Pasini and Pierini
Congenital atrophoderma of Pasini and Pierini

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Atrophoderma of Pierini and Pasini
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Atrophoderma of Pierini and Pasini is thought to possibly represent a late stage of morphea a type of localized scleroderma. Signs and symptoms of atrophoderma of Pierini and Pasini include multiple oval, darkened (hyperpigmented) plaques in which tissue under the skin breaks down so that there is a depression (dent) within the skin.^[1] Some findings suggest that atrophoderma of Pierini and Pasini may be associated with B burgdorferi, a bacteria that causes Lyme disease, in some cases.^[2]

References

Yu BD, Eisen AZ. Fitzpatrick’s Dermatology in Genral Medicine. 6th ed. In: . Scleroderma. New York NY:McGraw Hill; 2003:
Laumann A, Vashi N. Atrophoderma of Pasini and Pierini. eMedicine. 2009 Available at: http://emedicine.medscape.com/article/1073949-overview. Accessed January 21, 2010.

Questions & Answers (Found 1 Question)

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What is morphea and atrophoderma of Pierini and Pasini? How is atrophoderma of Pierini and Pasini treated? ( Click here for answer)

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More Detailed Information	Organizations	Services	Scientific Conferences	Clinical Trials & Research

General \| Selected Full-Text Journal Articles
More Detailed Information (Found 3 resources) Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates. Disclaimer General Medscape Reference provides information on this topic. Click on the link to view this information. You may need to register to view the medical textbook, but registration is free. PubMed is a searchable database of medical literature and lists journal articles that discuss Atrophoderma of Pierini and Pasini. Click on the link to view a sample search on this topic. Selected Full-Text Journal Articles Select volumes of the Scleroderma Care and Research Jounal can be viewed by visiting the Scleroderma Clinical Trials Consortium Web site. Click on the link above to learn more.

General | Selected Full-Text Journal Articles

More Detailed Information (Found 3 resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates. Disclaimer

General
- Medscape Reference provides information on this topic. Click on the link to view this information. You may need to register to view the medical textbook, but registration is free.
- PubMed is a searchable database of medical literature and lists journal articles that discuss Atrophoderma of Pierini and Pasini. Click on the link to view a sample search on this topic.
Selected Full-Text Journal Articles
- Select volumes of the Scleroderma Care and Research Jounal can be viewed by visiting the Scleroderma Clinical Trials Consortium Web site. Click on the link above to learn more.

Organizations Providing General Support \| Social Networking Websites
Organizations (Found 8 resources) Groups providing a wide range of services, supportive resources, and information. Disclaimer Scleroderma Research Foundation 220 Montgomery Street, Suite 1411 San Francisco, CA 94104 Toll-free: 1-800-441-CURE (2873) Telephone: 415-834-9444 Fax: 415-834-9177 E-mail form: http://www.srfcure.org/contact Web site: http://www.srfcure.org International Scleroderma Network (ISN) 7455 France Ave So #266 Edina, MN 55435-4702 Toll-free: 1-800-564-7099 Telephone: 1-952-583-5735 E-mail: isn@sclero.org Web site: http://www.sclero.org/ Scleroderma Foundation 300 Rosewood Drive, Suite 105 Danvers, MA 01923 Toll-free: 800-722-HOPE (4673) Phone: 978-463-5843 Fax: 978-463-5809 E-mail: sfinfo@scleroderma.org Web site: http://www.scleroderma.org/ Organizations Providing General Support Genetic Alliance 4301 Connecticut Avenue NW Suite 404 Washington, DC 20008-2369 Telephone: 202-966-5557 Fax: 202-966-8553 E-mail: info@geneticalliance.org Web site: http://www.geneticalliance.org National Organization for Rare Disorders (NORD) 55 Kenosia Avenue PO Box 1968 Danbury, CT 06813-1968 Toll-free: 1-800-999-6673 (voicemail only) Telephone: 203-744-0100 TTY: 203-797-9590 Fax: 203-798-2291 E-mail: orphan@rarediseases.org Web site: http://www.rarediseases.org/ Social Networking Websites DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story. Madisons Foundation P.O. Box 241956 Los Angeles, CA 90024 Telephone: 310-264-0826 Fax: 310-264-4766 E-mail: getinfo@madisonsfoundation.org Web site: http://www.madisonsfoundation.org/ RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

Organizations Providing General Support | Social Networking Websites

Organizations (Found 8 resources)
Groups providing a wide range of services, supportive resources, and information. Disclaimer

- Scleroderma Research Foundation
  220 Montgomery Street, Suite 1411
  San Francisco, CA 94104
  Toll-free: 1-800-441-CURE (2873)
  Telephone: 415-834-9444
  Fax: 415-834-9177
  E-mail form: http://www.srfcure.org/contact
  Web site: http://www.srfcure.org
- International Scleroderma Network (ISN)
  7455 France Ave So #266
  Edina, MN 55435-4702
  Toll-free: 1-800-564-7099
  Telephone: 1-952-583-5735
  E-mail: isn@sclero.org
  Web site: http://www.sclero.org/
- Scleroderma Foundation
  300 Rosewood Drive, Suite 105
  Danvers, MA 01923
  Toll-free: 800-722-HOPE (4673)
  Phone: 978-463-5843
  Fax: 978-463-5809
  E-mail: sfinfo@scleroderma.org
  Web site: http://www.scleroderma.org/
Organizations Providing General Support
- Genetic Alliance
  4301 Connecticut Avenue NW
  Suite 404
  Washington, DC 20008-2369
  Telephone: 202-966-5557
  Fax: 202-966-8553
  E-mail: info@geneticalliance.org
  Web site: http://www.geneticalliance.org
- National Organization for Rare Disorders (NORD)
  55 Kenosia Avenue
  PO Box 1968
  Danbury, CT 06813-1968
  Toll-free: 1-800-999-6673 (voicemail only)
  Telephone: 203-744-0100
  TTY: 203-797-9590
  Fax: 203-798-2291
  E-mail: orphan@rarediseases.org
  Web site: http://www.rarediseases.org/
Social Networking Websites
- DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
- Madisons Foundation
  P.O. Box 241956
  Los Angeles, CA 90024
  Telephone: 310-264-0826
  Fax: 310-264-4766
  E-mail: getinfo@madisonsfoundation.org
  Web site: http://www.madisonsfoundation.org/
- RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.


Services (Found 2 resources) Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories. Disclaimer 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.

Services (Found 2 resources)
Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories. Disclaimer

- 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 2 resources) Resources where you can find information on completed and upcoming scientific conferences and programs. Disclaimer 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. 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.

Scientific Conferences (Found 2 resources)
Resources where you can find information on completed and upcoming scientific conferences and programs. Disclaimer

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.
- 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 3 resources) Resources where you may find research studies and clinical trials. Disclaimer 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 Scleroderma Clinical Trials Consortium is an international organization of scleroderma clinical researchers. The consortium Web site contains a listing of active scleroderma trials, past copies of the Scleroderma Care and Research journal, and a tool for finding your nearest member institution. 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.

Clinical Trials & Research (Found 3 resources)
Resources where you may find research studies and clinical trials. Disclaimer

- 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 Scleroderma Clinical Trials Consortium is an international organization of scleroderma clinical researchers. The consortium Web site contains a listing of active scleroderma trials, past copies of the Scleroderma Care and Research journal, and a tool for finding your nearest member institution.
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.