Research and Resource Links:
Disclaimer:
Information or materials on this website are not intended to treat or replace your doctor’s advice nor do we endorse any particular product, technique, or idea. It is highly recommended that patients contact their haematologists or health care provider for adequate care and treatment.
Canadian Sickle Cell Associations:
Sickle Cell Association of Canada
http://www.sicklecelldisease.ca/
Sickle Cell Association of Alberta
http://www.sicklecellfoundationofalberta.org/index-2.html
Sickle Cell Association of Ontario
http://www.sicklecellontario.org/
Sickle Cell Awareness Group of Ontario
http://www.sicklecellanemia.ca/
Other Sickle Cell Associations:
Sickle Cell Disease Association of America
http://www.sicklecelldisease.org/
American Sickle Cell Anemia Association
http://www.ascaa.org/
Sickle Cell Disease Foundation of California
http://www.scdfc.org/
Other Sickle Cell Links:
NIH Clinical Trials Results via RSS
http://clinicaltrialsfeeds.org/clinical-trials/results/term=sickle+cell%20anemia
Sickle Cell Cure Foundation
http://sicklecellcurefoundation.org/
Foundation for Sickle Cell Disease Research
http://fscdr.org/
Providence Hematology
http://www.providencehematology.com/index.html
The University of British Columbia (UBC) - Centre for Blood Research
http://cbr.ubc.ca/
The BC Children’s Hospital Website
http://www.bcchildrens.ca/Services/Onc-HemBMT/blood-disorders/hemoglobinopathy.htm
Toronto Hospital for Sick Children – Pamphlets for many disorders, including sickle cell disease
www.aboutkidshealth.ca
St. Jude Children’s Research Hospital – Downloadable pamphlets for patients
http://www.stjude.org/stjude/v/index.jsp?vgnextoid=7d8029ff89c1d110VgnVCM1000001e0215acRCRD
Sickle Cell Information Center – Extensive resources and information for parents, children, teachers and health care professionals
http://scinfo.org/
National Heart, Lung and Blood Institute (US Department of Health) – Overview of sickle cell disease and helpful tips to stay healthy, and links to other NHLBI sickle cell resources
http://www.nhlbi.nih.gov/health/health-topics/topics/sca/
United Kingdom Sickle Cell Society – resources for adults and children
http://www.sicklecellsociety.org/websites/123reg/LinuxPackage22/si/ck/le/sicklecellsociety.org/public_html/
Sickle Cell Kids – an interactive website for kids with quizzes, videos and games
http://www.sicklecellkids.org/sicklecell_temp.html
American Society of Hematology
http://www.hematology.org/publications/50-years-in-hematology/4325.aspx
Dr. Andrew Weil, M.D.
http://search.drweil.com/search?site=DrWeil&client=DrWeil_search&proxystylesheet=DrWeil_search&output=xml_no_dtd&q=sickle+cell+disease&btn_search=SEARCH
WebMD
http://www.webmd.com/a-to-z-guides/sickle-cell-disease-nord
Health Link BC
http://www.healthlinkbc.ca/kb/content/nord/nord25.html
Sickle Cell Medical / Allopathic Treatment Links
National Heart, Lung, and Blood Institute
http://www.nhlbi.nih.gov/health/health-topics/topics/sca/treatment.html
Harvard Medical School Teaching Hospital / Beth Israel Deaconess Medical Center
http://www.bidmc.org/YourHealth/Therapeutic-Centers/Search.aspx?term=sickle%20cell%20anemia
- Treatments for Sickle Cell Disease
Mayo Clinic - Treatment
http://www.mayoclinic.com/health/sickle-cell-anemia/DS00324/DSECTION=treatments-and-drugs
University of Maryland Medical Center
http://umm.edu/health/medical/reports/articles/sickle-cell-disease
University of Illinois - Hospital and Health Sciences System
http://hospital.uillinois.edu/Patient_Care_Services/Sickle_Cell/Managing_Sickle_Cell.html
MedlinePlus
Bone Marrow Transplantation
http://www.nlm.nih.gov/medlineplus/bonemarrowtransplantation.html
Medscape
http://emedicine.medscape.com/article/205926-treatment
The Have a Heart for Sickle Cell Anemia Foundation
http://hhsca.org/about/
The New York times - Health Guide
http://www.nytimes.com/health/guides/disease/sickle-cell-anemia/
Sickle Cell Integrative / Holistic Treatment Links
US National Library of Medicine / National Institutes of Health
Anti-Sickling Effect of Dietary Thiocyanate in Prophylactic Control of Sickle Cell Anemia
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2571427/
http://www.ncbi.nlm.nih.gov/pubmed/3795284
Hartford Hospital
Natural Alternative Treatments
http://www.harthosp.org/healthlibrary/naturalalternativetreatments/default.aspx?chunkiid=38400
Mayo Clinic
Lifestyle and Home Remedies
http://www.mayoclinic.com/health/sickle-cell-anemia/DS00324/DSECTION=lifestyle-and-home-remedies
WebMD SC Treatment
Vitamins and Supplements for Sickle Cell Anemia
http://www.webmd.com/vitamins-supplements/condition-1873-Sickle+cell+anemia.aspx?diseaseid=1873&diseasename=Sickle+cell+anemia&source=0
Harvard Medical School Teaching Hospital / Beth Israel Deaconess Medical Center
Lifestyle Changes to Manage Sickle Cell Disease
http://www.bidmc.org/YourHealth/Therapeutic-Centers/Search/searchresults/searchresult.aspx?ChunkID=20420
Dr. Andrew Weil, M.D.
http://search.drweil.com/search?site=DrWeil&client=DrWeil_search&proxystylesheet=DrWeil_search&output=xml_no_dtd&q=sickle+cell+disease&btn_search=SEARCH
Earthing Techniques for Blood Cells and Pain Management:
http://www.psychologytoday.com/blog/heart-health/201005/earth-rx-amazing-solution-pain-and-stress
http://www.groundology.com/ca/scientific-research
http://www.holisticprimarycare.net/topics/topics-o-z/psyche-some-a-spirit/1198-earthing-restoring-health-from-the-ground-up
http://healthimpactnews.com/2013/grounding-helps-thin-dangerously-thick-blood-and-fights-inflammation-and-disease/
http://www.drbriffa.com/2013/05/03/new-study-on-earthing-finds-potential-benefits-for-the-circulation/
http://www.heartmdinstitute.com/health-topics/alternative-medicine/grounding-earthing/106-grounding-healthy-heart
http://www.hindawi.com/journals/jeph/2012/291541/
http://www.ncbi.nlm.nih.gov/pubmed/22757749
Pain Management Research:
Chronic Pain Self-Management Programs - Free 6 week workshops:
http://www.selfmanagementbc.ca/chronicpainprogram
St. Paul's Hospital Pain Programs
Outpatient - http://www.providencehealthcare.org/pain-outpatient-clinic
Inpatient - http://www.vch.ca/403/7676/?program_id=13515
http://www.vch.ca/403/7676/?program_id=13497
People in Pain Network
http://www.pipain.com/dr-pam-squire.html
- Options for Developing a Personal Toolbox of Pain Solutions
http://bcpaintoolkit.pipain.com/
Okanagan Interventional Pain Clinic
http://www.okpainclinic.ca/oipc/index.jsp?nav=services
Canadian Pain Coalition
http://www.canadianpaincoalition.ca/index.php/en/
Pain BC
http://www.painbc.ca/content/pain-clinics-and-services
http://www.painbc.ca/sites/default/files/images/McGowan_Pain_Summit_June_3_PSM_session_0.pdf
- The Pain Toolbox: Tools for Self-management (Webinar)
The Pain Toolkit
http://www.paintoolkit.org/
Vancouver Coastal Health: Complex Pain Clinic - Vancouver General Hospital (VGH)
https://www.vch.ca/403/7676/?program_id=1062
The Vancouver Sun: Chronic Pain - Managing it, Living with it
http://www.vancouversun.com/Health/Empowered-Health/What+your+pain+never+stopped/8244723/story.html
Queen's University Department of Psychology: Pain Day Event - Chronic Pain Service Integration
http://www.queensu.ca/psychology/painlab/2013painday.html
Canadian Institute for the Relief of Pain and Disability
http://www.cirpd.org/painmanagement/chronicpain/pages/default.aspx
American Chronic Pain Association
http://theacpa.org/
Stanford School of Medicine: Chronic Pain Self-Management Program
http://patienteducation.stanford.edu/programs/cpsmp.html
EMSC National Resource Center - Pediatric Pain Management Toolbox
http://www.childrensnational.org/emsc/pubres/oldtoolboxpages/pediatricpain.aspx
http://www.childrensnational.org/EMSC/EducationTraining/VideoAudioPodcasts.aspx
My Therapy Online
http://mytherapyonline.ca/
The Pain Community
http://paincommunity.org/
Partners Against Pain - Caregivers
http://www.partnersagainstpain.com/pain-management/caregiver.aspx
Body in Mind - Research into the Role of the Brain and Mind in Chronic Pain
http://www.bodyinmind.org/about-bim/
The British Pain Society
http://www.britishpainsociety.org/book_understanding_pain.pdf
Spirituality and Chronic Pain: Finding Meaning in the Misery - Video / Online Webinar by Pain BC
Part 1 - http://www.youtube.com/watch?v=JJqTYwu60ec
Part 2 - http://www.youtube.com/watch?v=7WCVSawhb3A&feature=youtu.be
Other Medical Related Links
Canadian Blood Services and Stem Cell Registry
http://www.bloodservices.ca/
https://www.blood.ca/CentreApps/Internet/UW_V502_MainEngine.nsf/page/E_ubmdrPKG-intro?opendocument&CloseMenu&p=OMSplashJoin
- Stem Cell Registry
BC Inherited Bleeding and Red Cell Disorder Provincial Program
http://www.pbco.ca/index.php?option=com_content&task=section&id=4&Itemid=85
Thalassemia Foundation of Canada
http://www.thalassemia.ca/
Thalassaemia International Federation
http://www.thalassaemia.org.cy/
Thalassemia Association of India / Thalassemics India
http://www.thalassemicsindia.org/
Canadian Hemophilia Society
www.hemophilia.ca/
International Myeloma Foundation
www.myeloma.org
The Leukemia & Lymphoma Society of Canada
www.leukemia-lymphoma.org/
The Leukemia/Bone Marrow Transplant Program of BC
www.leukemiabmtprogram.org/
Lymphoma Foundation Canada
www.lymphoma.ca/
Myeloma Vancouver
www.myelomavancouver.ca/
Pulmonary Hypertension Association of Canada
http://www.phacanada.ca/en/about-us/
- Gene Regulation Found to Play Role in Pulmonary Hypertension
Pulmonary Hypertension (PH) Association
PH and Sickle Cell Disease
http://www.phassociation.org/AssociatedDiseases/SickleCellDisease
http://www.phassociation.org/document.doc?id=960
