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Guest Bloggers

A total of 73 posts are filed under Guest Bloggers
Why the Tax Bill Poses A Double Threat to My Family
My son Jack spent the first four weeks of his life screaming in pain and crying from hunger. When he was two-weeks-old, the pediatrician… Continue Reading
Shared Goals, Rather than a Transactional Approach, Can Keep Relationships with Industry Ethical
Katie Jensen Rare disease patient advocacy organizations face ethical issues regarding their relationships with the pharmaceutical industry.… Continue Reading
“Pain Won’t Stop Me From Making Memories,” CRPS Patient Takes Back Up Her Favorite Winter Sport
by Kerry Hussey I’m 30 years old now, but was diagnosed with RSD/CRPS back when I was 13-years-old. I was one of the “lucky” ones,… Continue Reading
WIRED: A Radical Proposal For Preventing Rare Genetic Diseases
(SOURCE) One morning, A few months ago, I didn’t wake up. My 29-year-old heart had suffered from a sudden and complete cardiac arrest as I… Continue Reading
Rare Disease Report: China’s Rare Disease Policy (or Lack Thereof)
By James Radke of Rare Disease Report China is about to publish its first list of national rare diseases.   Given the population of China… Continue Reading
Alexi’s Story: One Mother Shares Her Daughter’s Journey With ADNP
Motherly instincts, intuition, whatever you want to call it— as mothers we know when something isn’t right, and we will persist until we… Continue Reading
Parent of a Medically Complex Child, “I am Always Choosing Between the Lesser of Two Evils”
My son Julian has always been a “sick kid.” He seemed to have infection after infection, picked up every cold that was around and was in… Continue Reading

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