CLL Society Support Group Member Resource Guide

[lankisterguy]

This list was created by the LA Support Group of The CLL Society and would be useful primarily for USA residents.

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CLL Society Support Group Member Resource Guide

There are many resources for CLL patients and caregivers. This is not a complete list, but a curation of resources.

National Resources

1.CLL Society

a.Website with useful toolbox of acronyms, templates for tracking lab results, and much more: cllsociety.org

b.Archived webinars and other education: cllsociety.org/archived-edu...

c.Upcoming webinars and other education: cllsociety.org/upcoming-cll...

d.Expert interviews from major conferences: cllsociety.org/conference-c...

e.CLL Society Tribune: cllsociety.org/the-cll-trib...

f.Clinical Trial information: cllsociety.org/clinical-tri...

g.Expert Access Program: cllsociety.org/cll-society-...

h.CLL Society Twitter: twitter.com/CllSociety

i.CLL Society Facebook Page: facebook.com/CLLsociety/

j.Dr. Brian Koffman’s CLL Blog: bkoffman.blogspot.com

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2.CLL Natural History Study at National Institutes of Health, Bethesda MD

a.Study, not a clinical trial. Accepts CLL patients whether untreated or previously treated. Study is in addition to your primary hematologist/oncologist.

Contacts: Pia Nierman, Research Nurse, [e-mail], and

Susan Soto, Research Nurse, [e-mail], 301-402-0797

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3.Major sources of high-quality information, workshops and local events:

a. Leukemia and Lymphoma Society (LLS)

i. CLL pages: lls.org/leukemia/chronic-ly...

ii. Help/questions line: support/information-special... or call

1-800-955- 4572- Offers help re clinical trials and financial aid and referrals

b. Lymphoma Research Foundation (LRF)

 i. lymphoma.org/aboutlymphoma/...

ii. Help/questions line: call 800-500-9976 or email to [e-mail]

iii. Webinars, newsletters, research updates available via email. Also, local “Ask the Doctor” programs presented several times per year

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4.Selected Patient Listservs and Resources

a. Health Unlocked listserv: healthunlocked.com/cllsupport

b. CLL Forum listserv: cllforum.com

c. ACOR listserv: email to [e-mail] with SUBSCRIBE CLL followed by your name in the message body (not the subject line). For example, to join send a message to [e-mail] whose only content is SUBSCRIBE CLL Joe Smith

d. CLL/SLL listerv, moderated by Dr Furman: send email to [e-mail] No subject line or message body is needed

e.Facebook groups

i. For all: facebook.com/groups/CLLSupp...

ii. Women’s group: facebook.com/groups/cllsllnhlcancersupportforwomen

f. “Living Well With CLL,” monthly newsletter with relevant CLL technical developments and info: email to [e-mail]

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5.Selected Sources for Clinical Trials

a. Searchable database of all trials: clinicaltrials.gov

b. NIH clinical trials: clinicalstudies.info.nih.go...

c. LLS support for clinical trials including finder and financial assistance:

lls.org/support/information...

d. LRF clinical trials resources and assistance: call [phone]

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Len

[13Artist]

Thank you!