Nursing and Rare Disease
Nursing and Rare Disease: A Nurse Perspective on Rare Disease Management Guest Blogger: Carolyn Knight Nursing is a demanding calling no matter what area you work in. You’re expected to give the best care possible, all while working with patients, doctors, families, and your fellow nurses. It’s hard enough on the best of days, but [...]
NEW STUDY RELEASED – Living with Chronic Illness
A Prescription for Advocacy – the results may surprise you! From March 2008 to March 2009, Advocacy for Patients with Chronic Illness and the University of Michigan Center for Managing Chronic Disease conducted a survey of more than 1500 people with chronic illnesses. The goal of the survey was to identify the obstacles facing people [...]
Counsyl Has Generously Donated Free Genetic Tests to Help Raise Awareness of SMA
August 28, 2011 By Bill Strong At the Gwendolyn Strong Foundation, we want as many people as possible to know that 1 in 40 people unknowingly carry a severe mutation in the SMA gene. Getting tested before pregnancy is one of the best ways to make sure that your child does not fall victim to a possibly [...]
FREE Summer Conference for Young Adults Living with Metobolic/Genetic Conditions
“ You’re Invited!!!” The Face Forward is for young adults with rare genetic, metabolic, and mitochondrial conditions. The mission of the project is to develop leadership, advocacy and life skills, in order to achieve good health, positive behavior, socioeconomic success and civic engagement. It is for young adults with aspirations to one day live an [...]
Brothers And Sisters Need Support Too – ForeverSibs!
ForeverSibs provides support for siblings of kids affected by rare disease! ForeverSibs was founded in 2009 in an effort to acknowledge the siblings of children who are affected by a rare disease/disorder, or autism. The mission of ForeverSibs is to honor and recognize the unique role of brothers and sisters of children with medical and [...]
Register to Win Free Genetic Test from Existence Genetics
‘Outsmart Your Genes’ Sweepstakes Enter to win FREE genetic testing from Existence Genetics (including counseling on the results too, which Brandon Colby, MD will provide to both you and your healthcare provider). The Grand Prize genetic panel test can assess your risk for over 700 diseases and traits. It’s saliva based (no needles/blood) and information [...]
Fifth Grade Students Looking To Help Support Kids With Rare Disease Through Prayer!
Fifth Grade Students at a southern California private non-denominational Christian School praying daily for health, for support and for the love of other children. Once again I find myself in awe with the kindness and dedication of children, looking to help and inspire those that are ill or have special needs. Perfect timing, at the [...]
Children's Rare Disease Network – RARE Blog partners with Local.com; Looking for Contributors!
Local.com, one of the nation’s leading online search sites has formed a partnership with RARE! We are contributing content to help educate some of their over 17 million visitors monthly through their website and search portal. This new partnership will provide tremendous value to the rare disease community, helping educate the general public, share stories, [...]
Perspectives From an Exhausted Mom
Decision. A word. An action. A finality of choice, sometimes met with indecision and fear. Sometimes the decision coaxes our self to make even more choices with certitude. We make decisions every day. Some decisions are reversible, most are final; and whatever we decide – we are always in resolve of the conclusion. I awoke [...]
Dr. Vivien Keil – Coping with Medically Fragile Children
Dr. Vivien Keil, December 1, 2010 – Welcome to Holland Let me share a brief story about a family coping with their son having a rare medical illness in which a bone marrow transplant was the only hope for his survival. Their son was in the hospital for several months and so I was fortunate [...]