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rarediseases.org

NORD is dedicated to supporting education, elevating care, advancing research, and driving policy for rare diseases

ccfa.org

we are a non-profit, volunteer-fueled organization dedicated to finding cures for crohn's disease and ulcerative colitis, and improving the quality of life of children and adults affected by these diseases.

hdsa.org

Arik C. Johnson, Psy.D., Jane S. Paulsen, Ph.D., 2014, 66 pages. A must-read for anyone who deals extensively with an HD-affected individual, this book explains not only the behavior challenges created by HD, but their origin in the HD-affected brain. By understanding the basis of these behaviors, the authors are able to suggest effective ways of dealing with and preparing for them. The book also covers environmental, individual and health factors that contribute to behavior problems. Problem-solving tips and techniques are given for behaviors arising from communication difficulties, memory problems, cognitive break-down and emotional instability. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. SPECIAL OFFER: Thanks to a generous educational grant, HDSA is able to offer this updated guide available to HD families and their medical professionals at no cost. Since the first edition of Understanding Behavior was published in 2000, much has been added to our understanding about HD including behavioral changes that take place along the continuum of the disease. Written specifically for medical professionals, this second edition contains strategies that can be shared with caregivers as well as case studies that illustrate many of the most challenging behaviors associated with HD. Click here to fill the form and get a printed copy of this guide.

eurordis.org

EURORDIS - Rare Diseases Europe. We advocate for, empower and engage people living with a rare disease in Europe.

cafamily.org.uk

we are contact, the charity for families with disabled children. we support and bring families together and help them take action for others

ntsad.org

If someone in your family or your partner’s family has Tay-Sachs, Canavan, GM1, or Sandhoff disease, consider carrier screening. We can help.

mda.org

When Cindi Reamer, a 58-year-old auditor and coder with limb-girdle muscular dystrophy (LGMD) was a child in Fort Wayne, Ind., she told her orthopedist that she wanted to work for him one day. At age 20, she did just that. Steven Glock, M.D., hired her as a telephone switchboard operator, and she has been working in his practice ever since, moving from the switchboard into coding. Holding down a job for more than 30 years as her LGMD progressed has been challenging at times. “There’s something every year that I could do last year but I can’t do this year,” she says.

bmrn.com

Learn how to contact our Medical Information team.

genzyme.com

Access Sanofi’s latest financial results, earnings reports, and investor events. Stay informed with key updates and strategic insights from our leadership.