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Index
Add where you live in this world, see where others living with HD live. Click on 'list' to see everyone's
post, where they are from and their email address if they're looking for hear from others!
Tools For Viewing <- Click here if you need free Adobe or Word
software to read documents, find helpful tips for copying and/or printing webpages, Mapquest, translator, talking dictionary,
etc.! |
Support
Information
Locate On-Line or State HD Support Groups, Centers of Excellence, Physicians, etc. plus other State
related support
Handouts on the most commonly asked Questions & Answers on Huntington's Disease; How to Become an advocate
for HD, contact your elected officials or the media, or make donations. Information on the clinical definitions used
in describing symptoms of HD.
Pictures Can Speak Louder Than Words! This site
is dedicated to the efforts of those people living with Huntington's Disease who have taken precious time out of their
life to create awareness about the disease! |
Information about the HDSA National Youth Alliance (NYA), link to Special Kids resources for young people
to learn a little bit about Huntington's Disease, Genetics and lots of resources to help with life, school and college plus
links to fun and interesting things to do and Speaking Out~Living With HD a very moving and touching portrayal of how the
devastation of Huntington's Disease affects the lives of our young children and adults living with HD.
Various different articles written especially for young people
living with HD. Some are in Word or PRF format for printing and sharing. |
HD Specific Handbooks Advanced Stages of Huntington's Disease Handbook; Caring
For People With Huntington's Disease; CNA's First Shift; Facing Huntington's Disease-A Guide for Families; The Juvenile Huntington's
Disease Handbook-A Guide for Physicians, Neurologists and Other Professionals 2001; Nursing Care in Late Stage HD; Physical
& Occupational Therapy for Huntington's Disease; Physician's Guide to Huntington's Disease; Understanding Behavior In
HD-Dr.J.Paulsen and Understanding Behavior-Other Resources |
Genetic
Testing
The decision to be tested for Huntington's Disease is an extremely difficult and soul-wrenching one to make.
The information on this site is a collection of articles, stories and information for people considering being tested for
Huntington's Disease and their families. Information on Genetic Testing, Testing in HD, Prenatal, Preimplantation, Testing
Children, Risks, Personal Stories, Discrimination in the Workforce, Insurance Issues.
HD Awareness
Cards & Brochures - Wallet sized cards you can personalize and hand out for HD awareness, to people who stare, on JHD etc.,
also HD awareness brochure you can personalize and print. |
Clinical
Studies & Research in HD About Clinical Trials & Resources, Quick connects to Clinical Trials Gov, Center Watch,
Medline Plus, HDSA Clinical Trials, Hereditary Disease Foundation, CARE-HD, Locations & Current Trials, Huntington's
Disease Drug Works [HDDW], Huntington Study Group [HSG], and the Huntington Project |
Quick
Connects Direct links to HDSA and the Hereditary Disease Foundation and their links, The HD Blog,
the Huntington's Society of Canada [HSC], the International Huntington's Disease Association, HDAC Huntington's Disease Advocacy
Center, the HDLighthouse, the MGH Huntington's Disease Forum, NINDS and the Stanford University HOPES Huntington's Disease
information. |
LiteratureHDSA downloadable HD literature and quick connects for those available for purchase. Excellent HD Fact Sheets made
available by the HDA-UK. |
Doctors
& Medications Locate A Neurologist or a Movement disorder clinics. Read others experiences with
medications and treatment for HD. |
Jean
& Kelly BioAbout myself and my daughter, Kelly, who had Juvenile Huntington's Disease. |
Over 2,000 Free Greeting Cards for almost any occasion. All have the message "Help CURE HD" Send one electronically! |
Jean
Miller's Other HD Websites <-
Advocacy, Donations
& Press, Activities of Daily Living [important tools
in care], Applying For Government Benefits, Communication In HD, Creating HD Awareness Posters [excellent awareness resource],
Drugs/Medications resources & insurance,
Feeding Tubes resources,Health & Science News Updates, HD Helpful Forms [daily care forms], HD Medical Definitions used by doctors], Help CURE HD Greeting Cards free, send one!, HD Memorial Quilt [powerful & available for loan], Huntington's Disease Symptoms, Insurance [life, LTC, children etc.], Juvenile Huntington's Disease, Our Final Journey [end of life resources],
Search Engines, Stages of Huntington's Disease, Swallowing Difficulties in HD and more! |
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