Chronic myeloid leukemia

Genetic and Rare Diseases Information Center (GARD)

Chronic granulocytic leukemia
Chronic myelogenous leukemia
CML
Leukemia, chronic myeloid

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Chronic myeloid leukemia
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For more information about Chronic myeloid leukemia click on the boxes below:

More Detailed Information	NLM Gateway	Medical Products	Services	Scientific Conferences	Support Groups	Clinical Trials & Research

General \| Insurance Issues
More Detailed Information (Found 10 resources) Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates General The CMPD Education Foundation provides online information on myeloproliferative disorders (MPD). Click on the link to view the resource. eMedicine 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. 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 Cancer Institute provides the most current information on cancer for patients, health professionals, and the general public. Click on the link to view information on this topic. The National Cancer Institute provides the most current information on cancer for patients, health professionals, and the general public. Click on the link to view information on this topic. The National Center for Biotechnology Information (NCBI) was established in 1988 as a national resource for molecular biology information. 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. The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Chronic myeloid leukemia. Click on the link to go to OMIM and review these resources. PubMed is a searchable database of medical literature and lists journal articles that discuss Chronic myeloid leukemia. Click on the link to view a sample search on this topic. Insurance Issues The Social Security Administration (SSA) created the Compassionate Allowance Initiative to speed up the processing of disability claims for applicants with certain conditions. Click on the link to view the Compassionate Allowance information for this condition. More information about applying for Social Security disability benefits is available online. Link: https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022140

General | Insurance Issues

More Detailed Information (Found 10 resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates

General
- The CMPD Education Foundation provides online information on myeloproliferative disorders (MPD). Click on the link to view the resource.
- eMedicine 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.
- 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 Cancer Institute provides the most current information on cancer for patients, health professionals, and the general public. Click on the link to view information on this topic.
- The National Cancer Institute provides the most current information on cancer for patients, health professionals, and the general public. Click on the link to view information on this topic.
- The National Center for Biotechnology Information (NCBI) was established in 1988 as a national resource for molecular biology information. 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.
- The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Chronic myeloid leukemia. Click on the link to go to OMIM and review these resources.
- PubMed is a searchable database of medical literature and lists journal articles that discuss Chronic myeloid leukemia. Click on the link to view a sample search on this topic.
Insurance Issues
- The Social Security Administration (SSA) created the Compassionate Allowance Initiative to speed up the processing of disability claims for applicants with certain conditions. Click on the link to view the Compassionate Allowance information for this condition. More information about applying for Social Security disability benefits is available online.
  Link: https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022140


NLM Gateway (Found 1 resource) A tool to search across multiple resources offered on the National Library of Medicine's Website NLM Gateway allows users to search many resources offered on the National Library of Medicine's Web site at once to quickly find more information about this condition. Some of the resources may be a duplicate of the resources listed on this page. To search NLM Gateway, click on the link; the condition name will already be in the search box, so you can just click the “Search” button.

NLM Gateway (Found 1 resource)
A tool to search across multiple resources offered on the National Library of Medicine's Website

- NLM Gateway allows users to search many resources offered on the National Library of Medicine's Web site at once to quickly find more information about this condition. Some of the resources may be a duplicate of the resources listed on this page. To search NLM Gateway, click on the link; the condition name will already be in the search box, so you can just click the “Search” button.

Medical Products (Found 4 resources)

U.S. Food and Drug Administration

The Office of Orphan Products Development (OOPD)

The medications listed in the table below have been approved by the Food and Drug Administration (FDA) for treatment of this condition. The FDA Office of Orphan Products Development designates "orphan products" for those that treat rare diseases affecting fewer than 200,000 Americans. The table below may not be an exhaustive list of drugs or products used to treat this condition. There may be other products available that are not considered orphan products. To search all FDA approved drugs, visit Drugs@FDA You can find orphan products used to treat other conditions by searching the Orphan Drug Product Designation database.

Generic Name	Trade Name (Manufacturer Name)	Indication	Resources
Dasatinib	Sprycel® (Bristol-Myers Squibb Company)	Treatment of adults with Philadelphia chromosome-positive acute lymphoblastic leukemia with resistance or intolerance to prior therapy	Drug Information Portal
Imatinib mesylate	Gleevec® (Novartis Pharmaceuticals Corp.)	Treatment of chronic myelogenous leukemia	Drug Information Portal
Interferon alfa-2a (recombinant)	Roferon®-A (Hoffmann-La Roche, Inc.)	Treatment of chronic myelogenous leukemia.	Drug Information Portal
Nilotinib	Tasigna® (Novartis Pharmaceutical Corporation)	For the use for chronic phase (CP) and accelerated phase (AP) Philadelphia chromosome positive chronic myelogenous leukemia (CML) in adult patients resistant to or intolerant to prior therapy that included Gleevec(imatinib)	Drug Information Portal MedlinePlus


Services (Found 1 resource) Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories 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 1 resource)
Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories

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) Resources where you can find information on completed and upcoming scientific conferences and programs Past Conferences 18th International RUNX Workshop, August 14, 2011 - August 17, 2011 Location: Eleanor Roosevelt College, University of California, San Diego, La Jolla, CA Description: Based on the long-standing interactive and inter-disciplinary traditions of the 17 previous RUNX workshops, the organizers anticipate that the 18th International RUNX Workshop will offer excellent opportunities for the cross-pollination of ideas and the development of new collaborations in this rapidly expanding field. Overcoming Barriers to International Clinical Trials for Rare Cancers , December 10, 2010 Description: The goals of this conference were to introduce key institutional players to the topic of international clinical trials in rare cancers and to establish an ongoing dialogue. Participants left the meeting with a set of specific priorities that need to be enacted to promote these trials. The meeting promoted consensus on the way that resources are prioritized to address rare cancers. Participants were asked to convey the content of the meeting to their constituencies and to follow up with pilot concepts. 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 3 resources)
Resources where you can find information on completed and upcoming scientific conferences and programs

Past Conferences
- 18th International RUNX Workshop, August 14, 2011 - August 17, 2011
  Location: Eleanor Roosevelt College, University of California, San Diego, La Jolla, CA
  Description: Based on the long-standing interactive and inter-disciplinary traditions of the 17 previous RUNX workshops, the organizers anticipate that the 18th International RUNX Workshop will offer excellent opportunities for the cross-pollination of ideas and the development of new collaborations in this rapidly expanding field.
- Overcoming Barriers to International Clinical Trials for Rare Cancers , December 10, 2010
  Description: The goals of this conference were to introduce key institutional players to the topic of international clinical trials in rare cancers and to establish an ongoing dialogue. Participants left the meeting with a set of specific priorities that need to be enacted to promote these trials. The meeting promoted consensus on the way that resources are prioritized to address rare cancers. Participants were asked to convey the content of the meeting to their constituencies and to follow up with pilot concepts.
- 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.

Disease-Specific Organizations \| Umbrella Organizations \| Social Media/Blogs \| Parent Matching Organizations
Support Groups (Found 9 resources) Groups providing a wide range of services, supportive resources, and information Disease-Specific Organizations MPD Foundation 233 S. Wacker Drive Suite 375 Chicago, IL 60606 Fax: 312-332-0840 Telephone: 312-683-7243 E-mail: rrosen@mpdfoundation.org Web site: http://www.mpdfoundation.org Umbrella Organizations 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 Media/Blogs 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. MPD-Support: Myeloproliferative Diseases Support and Daily E-mail Digest The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more. RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more. Parent Matching Organizations 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/ MUMS National Parent to Parent Network 150 Custer Court Green Bay, WI 54301 Toll-free: 1-877-336-5333 Telephone: 920-336-5333 Fax: 920-339-0995 E-mail: mums@netnet.net Web site: http://www.netnet.net/mums/

Disease-Specific Organizations | Umbrella Organizations | Social Media/Blogs | Parent Matching Organizations

Support Groups (Found 9 resources)
Groups providing a wide range of services, supportive resources, and information

Disease-Specific Organizations
- MPD Foundation
  233 S. Wacker Drive
  Suite 375
  Chicago, IL 60606
  Fax: 312-332-0840
  Telephone: 312-683-7243
  E-mail: rrosen@mpdfoundation.org
  Web site: http://www.mpdfoundation.org
Umbrella Organizations
- 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 Media/Blogs
- 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.
- MPD-Support: Myeloproliferative Diseases Support and Daily E-mail Digest
- The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.
- RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.
Parent Matching Organizations
- 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/
- MUMS National Parent to Parent Network
  150 Custer Court
  Green Bay, WI 54301
  Toll-free: 1-877-336-5333
  Telephone: 920-336-5333
  Fax: 920-339-0995
  E-mail: mums@netnet.net
  Web site: http://www.netnet.net/mums/


Clinical Trials & Research (Found 4 resources) Resources where you may find research studies and clinical trials ClinicalTrials.gov lists trials that are studying or have studied Chronic myeloid leukemia. 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 Myeloproliferative Disorders Research Consortium (MPD-RC) is an international, multi-institutional non-profit consortium funded by the National Cancer Institute (NCI) at the National Institutes of Health and set up to coordinate, facilitate, and perform basic and clinic research investigating the genetics of MPDs with the goal of developing therapy. To learn more, click on the link. 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 Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.

Clinical Trials & Research (Found 4 resources)
Resources where you may find research studies and clinical trials

- ClinicalTrials.gov lists trials that are studying or have studied Chronic myeloid leukemia. 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 Myeloproliferative Disorders Research Consortium (MPD-RC) is an international, multi-institutional non-profit consortium funded by the National Cancer Institute (NCI) at the National Institutes of Health and set up to coordinate, facilitate, and perform basic and clinic research investigating the genetics of MPDs with the goal of developing therapy. To learn more, click on the link.
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 Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.

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