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Patient Library

Home / Physical Health / Patient Library

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FSHD Advocate 2023 Issue 1
FSHD Advocate 2023 Issue 1

FSHD Advocate 2023 Issue 1

LinkFSHD Advocate, Newslettersadvocate newsletters
Understanding and Navigating Medicare

Global Genes_Understanding-Navigating-Medicare

Excellent guide from Global Genes for people with long-term disability on how to navigate Medicare coverage.

PDFEducational resources, Guides to Living with FSHDeducational-resources guides-to-living-with-fshd brochures-and-more
Physical therapy for shoulder dyskinesia in FSHD
Physical therapy for shoulder dyskinesia in FSHD

Download

Slides from 2022 FSHD Connect plenary talk by Jos IJspeert.

PDFBrochures and More, Connect Conference, Educational resources, Health care toolkit, Researchbrochures-and-more connect-conference educational-resources health-care-toolkit research
The road aheads
FSHD Advocate 2022 Issue 3

FSHD Advocate 2022 Issue 3

LinkFSHD Advocate, Newslettersadvocate newsletters
FSHD Advocate 2022 Issue 2
FSHD Advocate 2022 Issue 2

FSHD Advocate 2022 Issue 2

LinkFSHD Advocate, Newslettersadvocate newsletters
FSHD Advocate 2022 Issue 1
FSHD Advocate 2022 Issue 1

FSHD Advocate 2022 Issue 1

LinkFSHD Advocate, Newslettersadvocate newsletters
FSHD Advocate 2021 Issue 3
FSHD Advocate 2021 Issue 3

FSHD Advocate 2021 Issue 3

LinkFSHD Advocate, Newslettersadvocate newsletters
2021 Advocate issue 3
FSHD Advocate 2021 Issue 2

FSHD Advocate 2021 Issue 2

LINKFSHD Advocate, Newslettersadvocate newsletters
Notes on spinal and scapular surgery
Notes of spinal and scapular surgery

Notes on spinal and scapular surgery

PDFBrochures and More, Health care toolkitbrochures-and-more health-care-toolkit
Cover of FSHD Advocate 2021 Issue 1
FSHD Advocate 2021 Issue 1

FSHD Advocate 2021 Issue 1

FSHD Advocate, Newslettersadvocate newsletters
FSHD Advocate 2020 Issue 3
FSHD Advocate 2020 Issue 3

FSHD Advocate 2020 Issue 3

LINKFSHD Advocate, Newslettersadvocate newsletters
Advocacy
Voice of the Patient Report

Download

PDFAdvocacy, Researchadvocacy research
Research
Industry Collaborative for Therapy Development in FSHD

Download

PDFResearchresearch
100 Questions & Answers About Muscular Dystrophy
100 Questions & Answers About Muscular Dystrophy (First Edition, 2020)

Link

by Kathryn R. Wagner, MD, PhD

LinkBooks by & for patients, Brochures and More, Educational resourcesbooks-by-for-patients brochures-and-more educational-resources
Advocate 2020 Issue 2
FSHD Advocate 2020 Issue 2

FSHD Advocate 2020 Issue 2

LinkFSHD Advocate, Newslettersadvocate newsletters
FSHD Advocate 2020 Issue 1
FSHD Advocate 2020 Issue 1

FSHD Advocate 2020 Issue 1

LinkFSHD Advocate, Newslettersadvocate newsletters
FSHD Advocate
FSHD Advocate 2019 Issue 3

2019 FSHD Advocate Issue 3

LinkFSHD Advocate, Newslettersadvocate newsletters
FSHD Society 2012 Atlanta Meeting
FSHD Society 2012 Atlanta Meeting

Link

Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel.

Link | YouTubeYouTube Videosyoutube-videos brochures-and-more
FSHD Connect 2014
FSHD Connect 2014

Link

Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel.

Link | YouTubeYouTube Videosyoutube-videos brochures-and-more
FSHD Connect 2016
FSHD Connect 2016

Link

Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel.

Link | YouTubeYouTube Videosyoutube-videos brochures-and-more
FSHD Connect 2018
FSHD Connect 2018

Link

Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel.

Link | YouTubeYouTube Videosyoutube-videos brochures-and-more
FSHD Society Public Service Announcements
FSHD Society Public Service Announcements

Link

Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel.

Link | YouTubeYouTube Videosyoutube-videos brochures-and-more
FSHD Society Events
FSHD Society Events

Link

Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel.

Link | YouTubeYouTube Videosyoutube-videos brochures-and-more
FSHD Society Living with FSHD
FSHD Society Living with FSHD

Link

Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel.

Link | YouTubeYouTube Videosyoutube-videos brochures-and-more
FSHD Society Medical Seminars
FSHD Society Medical Seminars

Link

Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel.

Link | YouTubeYouTube Videosyoutube-videos brochures-and-more
FSHD Society Research Seminars
FSHD Society Research Seminars

Link

Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel.

Link | YouTubeYouTube Videosyoutube-videos brochures-and-more
The Resource Finder at Kennedy Krieger Institute
The Resource Finder at Kennedy Krieger Institute

Link

Please contact us to recommend more web resources.

LinkBrochures and More, Websitesbrochures-and-more websites
FSHD Radio
FSH Society Radio Show Live-15 with guests Beth Johnston and Leigh Reynolds

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Podcast | Audio | mp3FSH Society Radio Podcastsfsh-society-radio-podcasts
FSHD Radio
FSH Society Radio Show Live - 16 guest Kristin Duquette

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Podcast | Audio | mp3FSH Society Radio Podcastsfsh-society-radio-podcasts
FSHD Radio
FSH Society Radio Show Live-17 guest Taylor Quigg

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Podcast | Audio | mp3FSH Society Radio Podcastsfsh-society-radio-podcasts
FSHD Radio
FSH Society Radio Show live-18 guest Skylar Conover

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Podcast | Audio | mp3FSH Society Radio Podcastsfsh-society-radio-podcasts
FSHD Radio
FSH Society Radio Show live-19 guest Amanda Rickard

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Podcast | Audio | mp3FSH Society Radio Podcastsfsh-society-radio-podcasts
FSHD Radio
FSH Society Radio Show Live-20 Guest June Kinoshita

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Podcast | Audio | mp3FSH Society Radio Podcastsfsh-society-radio-podcasts
FSHD Society webinar with Dr Rabi Tawil
FSH Society webinar with Dr Rabi Tawil

Link

LinkBrochures and More, YouTube Videosbrochures-and-more youtube-videos
Facial surgery methods for Facioscapulohumeral Muscular Dystrophy
Facial surgery methods for Facioscapulohumeral Muscular Dystrophy

Link

LinkBrochures and More, YouTube Videosbrochures-and-more youtube-videos
Dr. Anthony Romeo describes scapularthoracic fusion surgery for FSHD
Dr. Anthony Romeo describes scapularthoracic fusion surgery for FSHD

Link

LinkBrochures and More, YouTube Videosbrochures-and-more youtube-videos
FSHD Society – Introduction to yoga for people with FSHD
FSH Society – Introduction to yoga for people with FSHD

Link

LinkBrochures and More, YouTube Videosbrochures-and-more youtube-videos
FSH Society Michigan Meeting – Waking up your muscles
FSH Society Michigan Meeting

Link

Waking up your muscles

LinkBrochures and More, YouTube Videosbrochures-and-more youtube-videos
Muscle Activation Exercises with Lynnette Rasmussen FSH Society
Muscle Activation Exercises with Lynnette Rasmussen FSH Society

Link

LinkBrochures and More, YouTube Videosbrochures-and-more youtube-videos
Our YouTube channel has dozens of educational videos
Our YouTube channel has dozens of educational videos

Link

LinkBrochures and More, YouTube Videosbrochures-and-more youtube-videos
Living with FSHD Library
Dealing with Physical Decline from Muscular Dystrophy, by Don Nemke

Download

by Don Nemke

PDFBrochures and More, Guides to Living with FSHDbrochures-and-more guides-to-living-with-fshd
Educational resource
A Guide for Schools

Download

PDFBrochures and More, Guides to Living with FSHDbrochures-and-more guides-to-living-with-fshd
Educational resources
FSHD and Social Support: A Guide for Friends and Family

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PDFBrochures and More, Guides to Living with FSHDbrochures-and-more guides-to-living-with-fshd
Living with FSHD Library
You Are Not Alone. A Guide for the Newly Diagnosed

Download

PDFBrochures and More, Guides to Living with FSHDbrochures-and-more guides-to-living-with-fshd
Educational resource
171st ENMC International Workshop- Standards of care and management of FSHD

Download

PDFBrochures and More, Useful professional publicationsbrochures-and-more useful-professional-publications
Brochures and more
Evidence-based FSHD care guideline AAN tools and materials

Link

LinkBrochures and More, Useful professional publicationsbrochures-and-more useful-professional-publications
Educational resource
Evidence-based FSHD care guideline – Summary for patients & families

Link

LinkBrochures and More, Useful professional publicationsbrochures-and-more useful-professional-publications
Educational resource
Evidence-based FSHD care guideline – Summary for clinicians

Link

Useful professional publications to share with your doctor

LinkBrochures and More, Useful professional publicationsbrochures-and-more useful-professional-publications
Healthcare toolkit
Medical Equipment: Access Solutions and Respiratory Therapy by Howard Chabner

Download

PDFBrochures and More, Health care toolkitbrochures-and-more health-care-toolkit
Educational resource
Early-onset (infantile) FSHD Fact Sheet

Download

PDFBrochures and More, Health care toolkitbrochures-and-more health-care-toolkit
Educational resource
FSHD Fact Sheet

Download

PDFBrochures and More, Health care toolkitbrochures-and-more health-care-toolkit
Healthcare toolkit
An Overview of Anesthetic Concerns by Raymond Huml

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PDFBrochures and More, Health care toolkitbrochures-and-more health-care-toolkit
Healthcare toolkit
Guidelines for Physical Therapists Treating Clients with Neuromuscular Disorders

Download

PDFBrochures and More, Health care toolkitbrochures-and-more health-care-toolkit
Healthcare toolkit
Letter Requesting Insurance Coverage for Genetic Testing (Word Doc Templates)

Download

DOC | DOCXBrochures and More, Health care toolkitbrochures-and-more health-care-toolkit
Healthcare toolkit
Evidence-based FSHD Care Guideline + Online Resources

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PDFBrochures and More, Health care toolkitbrochures-and-more health-care-toolkit
Healthcare toolkit
Resources for FSHD patients & families

Download

PDFBrochures and More, Health care toolkitbrochures-and-more health-care-toolkit
Healthcare toolkit
Physical Therapy for FSHD brochure (in Chinese)

Physical Therapy for FSHD brochure (in Chinese)

PDFBrochures and More, Health care toolkitbrochures-and-more health-care-toolkit
Healthcare toolkit
FSH Society Medical Alert card

Download

PDFBrochures and More, Health care toolkitbrochures-and-more health-care-toolkit
Healthcare toolkit
About FSHD (in Spanish; in Chinese)

About FSHD (in Spanish; in Chinese)

PDFBrochures and More, Health care toolkitbrochures-and-more health-care-toolkit
Watch Newsletter
FSH Watch: Vol. 6, No. 1, Fall 1999

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PDFNewslettersnewsletters
Watch Newsletter
FSH Watch: Vol. 7, No. 1, Spring 2001

Download

PDFNewslettersnewsletters
Watch newsletter
FSH Watch: Vol. 8, No. 1, Winter 2003

Download

PDFNewslettersnewsletters
Watch newsletter
FSH Watch: Vol. 8, No. 2, Spring 2003

Download

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Summer 2005: Vol 10, No. 1.

Download

48 pages (PDF)

PDFNewslettersnewsletters
Watch newsletter
FSH Watch Newsletter Summer 2007

Download

52 pages (PDF)

PDFNewslettersnewsletters
Watch newsletter
FSH Watch Newsletter Fall 2007

Download

12 pages (PDF)

PDFNewslettersnewsletters
Watch newsletter
FSH Watch Newsletter Winter 2008

Download

16 pages (PDF)

PDFNewslettersnewsletters
Watch newsletter
FSH Watch Newsletter Spring 2008

Download

12 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Summer 2008 Research Issue

Download

24 pages (PDF)

PDFNewslettersnewsletters
Watch newsletter
FSH Watch Newsletter FSHD Wellstone MD CRC

Download

2 pages (PDF)

PDFNewslettersnewsletters
Watch newsletter
FSH Watch Newsletter Fall 2008

Download

12 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Winter 2009

Download

12 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Spring 2009

Download

12 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Summer 2009 Research Issue

Download

28 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Fall 2009

Download

12 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Winter 2010

Download

12 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Spring 2010

Download

12 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Summer Fall Research 2010

Download

24 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Winter 2011

Download

16 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Spring 2011

Download

12 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Summer 2011 Research Issue

Download

28 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Fall 2011

Download

12 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Winter 2012

Download

16 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Summer Fall 2012

Download

20 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Winter 2013

Download

28 pages (PDF)

PDFNewslettersnewsletters
FSH Watch Newsletter Spring 2013
FSH Watch Newsletter Spring 2013

Download

20 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Summer Fall 2013 Annual Research Issue

Download

32 pages (PDF)

PDFNewslettersnewsletters
Watch newsletter
FSH Watch Newsletter Winter 2014

Download

28 pages (PDF)

PDFNewslettersnewsletters
FSH Watch Newsletter Spring 2014
FSH Watch Newsletter Spring 2014

Download

20 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Summer Fall 2014 Annual Research Issue

Download

24 pages (PDF)

PDFNewslettersnewsletters
FSH Watch Newsletter Winter 2015
FSH Watch Newsletter Winter 2015

Download

24 pages (PDF)

PDFNewslettersnewsletters
Watch newsletter
FSH Watch Newsletter Spring/Summer 2015

Download

28 pages (PDF)

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch Newsletter Fall 2015

Download

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch 2016 Issue 1

Download

PDFNewslettersnewsletters
Watch newsletter
FSH Watch 2016 Issue 2

Download

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch 2016 Issue 3

Download

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch 2017 Issue 1

Download

PDFNewslettersnewsletters
Watch newsletter
FSH Watch 2017 Issue 2

Download

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch 2017 Issue 3

Download

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch 2018 Issue 1

Download

PDFNewslettersnewsletters
Watch Newsletter
FSH Watch 2018 – Issue 2

Download

PDFNewslettersnewsletters
Research library
Consent Form for Participation in a Neuromuscular Research Study

Download

PDFResearchresearch
Research library
Muscle Surgery and Blood Samples from Patients with FSHD

Download

PDFResearchresearch
Research
May 2012: A Long ncRNA Links Copy Number Variation to a Polycomb/Trithorax Epigenetic Switch in FSHD Muscular Dystrophy

Link

LINKResearchresearch
Research
July 2012: FSHD Family Studies of DUX4 Expression

Download

PDFResearchresearch
Research
Sept 2014: FSH Society helps researchers develop an inducible DUX4 mouse model

Link

LINKResearchresearch
Research
Orphanet Report Series: Prevalence of Rare Diseases

Download

PDFResearchresearch
patient conference library
2012 FSH Society patient conference, Atlanta

Link

Videos

LINKConnect Conferenceconnect-conference
Connect conference
FSH Society Fundraising Workshop

Download

PDFConnect Conferenceconnect-conference
patient conference library
FSHDselfies Campaign

Download

PDFConnect Conferenceconnect-conference
Connect Conference
Progress Towards Clinical Trials

Download

2014 FSHD Patient Connect conference presentation by Kathryn Wagner

PDFConnect Conferenceconnect-conference
Connect Conference
Consensus model for FSHD identifies opportunities for therapy

Download

2014 FSHD Patient Connect conference presentation by Stepehn Tapscott

PDFConnect Conferenceconnect-conference
Connect Conference
Unlocking the Clinical Trial Toolbox

Download

2014 FSHD Patient Connect conference presentation by Jefferey Statland

PDFConnect Conferenceconnect-conference
Connect Conference
FSHD & Nutrition

Download

2014 FSHD Patient Connect conference presentation by Sabrina Sacconi

PDFConnect Conferenceconnect-conference
Connect conference
Update on PT and Exercise

Download

2014 FSHD Patient Connect conference presentation by Shree Pandya

PDFConnect Conferenceconnect-conference
Connect Conference
Modeling FSHD in zebrafish

Download

2014 FSHD Patient Connect conference presentation by Louis Kunkel

PDFConnect Conferenceconnect-conference
Connect Conference
Genetically Similar Epigenetically Different

Download

2014 FSHD Patient Connect conference presentation by Peter Jones

PDFConnect Conferenceconnect-conference
Connect Conference
Natural History Studies

Download

2014 FSHD Patient Connect conference presentation by Ray Huml

PDFConnect Conferenceconnect-conference
Connect Conference
Multicenter infantile onset FSHD study

Download

2014 FSHD Patient Connect conference presentation by Yi-Wen Chen

PDFConnect Conferenceconnect-conference
advocacy library
#FSHDselfies

Download

PDFAdvocacyadvocacy
advocacy library
FSH Society FY2017 Written Testimony before the US House Appropriations Committee on NIH Research, April 16, 2016

Download

PDFAdvocacyadvocacy
FSH Society FY2017 Written Testimony before the US Senate Appropriations Committee on NIH Research, April 16, 2016
FSH Society FY2017 Written Testimony before the US Senate Appropriations Committee on NIH Research, April 16, 2016

Download

PDFAdvocacyadvocacy
advocacy library
April 2015 Testimony Submitted to the US House Appropriations Committee

Download

PDFAdvocacyadvocacy
advocacy library
March 2015 Testimony Submitted to U.S. Senate Appropriations Subcommittee

Download

PDFAdvocacyadvocacy
advocacy library
May 2014 Testimony Submitted to U.S. Senate Appropriations Subcommittee

Download

PDFAdvocacyadvocacy
advocacy library
March 2014 Testimony Submitted to U.S. House Appropriations Subcommittee

Download

PDFAdvocacyadvocacy
advocacy library
May 2013 Testimony Submitted to U.S. Senate Appropriations Subcommittee

Download

PDFAdvocacyadvocacy
advocacy library
March 2013 Testimony Submitted to U.S. House Appropriations Committee

Download

PDFAdvocacyadvocacy
advocacy library
April 2012 Testimony Submitted to US Senate Appropriations Subcommittee

Download

PDFAdvocacyadvocacy
advocacy library
March 2012 Testimony Submitted to US Senate Appropriations Subcommittee

Download

PDFAdvocacyadvocacy
advocacy library
April 2011 Testimony Submitted to US Senate Appropriates Subcommittee

Download

PDFAdvocacyadvocacy
advocacy library
April 2010 Testimony Submitted to US Senate Appropriations Subcommittee

Download

PDFAdvocacyadvocacy
advocacy library
April 2010 Testimony Submitted to US House of Representatives Appropriations Subcommittee

Download

PDFAdvocacyadvocacy
advocacy library
May 2009 Testimony Submitted to US Senate Appropriations Subcommittee

Download

PDFAdvocacyadvocacy
advocacy library
April 2008 Testimony Submitted to US Senate Appropriations Subcommittee

Download

PDFAdvocacyadvocacy
advocacy library
March 2008 Testimony Submitted to US House of Representatives Appropriations Subcommittee

Download

PDFAdvocacyadvocacy
advocacy library
March 2007 Testimony Submitted to Subcommittee on Labor, Health and Human Services

Download

PDFAdvocacyadvocacy
advocacy library
March 2007 Testimony Submitted to US House of Representatives Appropriations Subcommittee

Download

PDFAdvocacyadvocacy
advocacy library
March 2007 Testimony Submitted to US Senate Appropriations Subcommittee

Download

PDFAdvocacyadvocacy
advocacy library
Honoring the Memory of Stephen Jacobsen, Karen Johnsen and William Michael

Download

PDFEducational resourceseducational-resources
Educational resources library
Summary of 2013

Download

PDFEducational resourceseducational-resources
Map of the FSHD-linked Genes
Map of the FSHD-linked Genes

Download

PDFEducational resourceseducational-resources
Educational resources library
Scapular Fixation Surgery

Download

PDFEducational resourceseducational-resources
living with fshd library
Breathing Health in FSHD

Download

PDFEducational resourceseducational-resources
Educational resource
FSHD and Exercise (2014) by Julie Hershberg, PT

Download

by Julie Hershberg, PT (2014)

PDFEducational resourceseducational-resources
Educational resources library
Physical Activity and Exercise in FSHD (2012) by Craig McDonald, MD

Download

By Craig McDonald, MD (2012)

PDFEducational resourceseducational-resources
Best Practice Guidelines on Genetic Diagnostics of FSHD
Best Practice Guidelines on Genetic Diagnostics of FSHD

Download

PDFEducational resourceseducational-resources
Decision to stop working
The decision to stop working

Download

by Howard Chabner

PDFBrochures and More, Educational resources, Guides to Living with FSHDbrochures-and-more educational-resources guides-to-living-with-fshd
educational resources library
Resource list for finding information and help

Download

by Bill Maclean

PDFEducational resourceseducational-resources
living with fshd library
Resource list for Navigating Intimate Relationships

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by Hilary Michaels

PDFBrochures and More, Educational resources, Guides to Living with FSHDbrochures-and-more educational-resources guides-to-living-with-fshd
Educational resources
Managing FSHD: One Patient’s Perspective

Download

By Howard Chabner

PDFBrochures and More, Educational resources, Guides to Living with FSHDbrochures-and-more educational-resources guides-to-living-with-fshd
Educational resource
171st ENMC International Workshop- Standards of care and management of FSHD

Download

PDFEducational resourceseducational-resources
Educational resource
Evidence-based FSHD care guideline – Summary for patients & families.

Download

PDFEducational resourceseducational-resources
Educational resource
Evidence-based FSHD care guideline – Summary for clinicians.

Download

PDFEducational resourceseducational-resources
Educational resource
A Guide for Schools

Download

PDFEducational resourceseducational-resources
Educational resources
A Guide for Friends and Family

Download

PDFEducational resourceseducational-resources
Healthcare Toolkit
Health Tips

Download

PDFBrochures and More, Educational resources, Health care toolkitbrochures-and-more educational-resources health-care-toolkit
Educational resource
Physical Therapy for FSHD Brochure

Download

Physical Therapy and FSHD brochure by Shree Pandya, PT, DPT, MS and Kate Eichinger, PhD, PT, DPT, NCS

PDFEducational resourceseducational-resources
Educational resource
Fact Sheet on FSHD / infantile-onset FSHD

Download

PDFEducational resourceseducational-resources
Educational resource
About the FSH Society

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PDFEducational resourceseducational-resources
Educational resources
About FSHD

Download

PDFEducational resourceseducational-resources
Patient Library- tips for power wheelchair
Tips for air travel with a power wheelchair

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by Howard Chabner, lawyer, disabilities advocate, and world traveler.

PDFBrochures and More, Educational resources, Guides to Living with FSHDbrochures-and-more educational-resources guides-to-living-with-fshd
Educational resource
A physiatric approach to FSH muscular dystrophy 

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by Susan Keeshin, MD, Shirley Ryan Abilities Lab

PDFEducational resourceseducational-resources
FSHD Advocate
FSHD Advocate 2019 Issue 2

FSHD Advocate 2019 Issue 2

LinkFSHD Advocate, Newslettersadvocate newsletters
FSHD Advocate
FSHD Advocate 2019 Issue 1

FSHD Advocate 2019 Issue 1

LinkFSHD Advocate, Newslettersadvocate newsletters
FSHD Advocate
FSHD Advocate 2018 Issue 3

FSHD Advocate 2018 Issue 3

LinkFSHD Advocate, Newslettersadvocate newsletters

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