Marybeth CamboniHow Rare and Beautiful It Is To Even ExistEvery child with a neuromuscular disease is invited to attend MDA Camp, sponsored by the Muscular Dystrophy Association, starting at age 8…Feb 29
InHealth decodedbyInvitae® (a Labcorp company)Rowan’s story: How genetic testing for a rare condition brought answers and communityBaby Rowan’s seizures mystified his doctors until genetic testing revealed their source and led his family to a life-changing communityFeb 22
WeTrials Inc.Rare Disease Day: A Global Movement for ChangeEvery year, on the last day of February (29th in leap years), the world comes together to recognize Rare Disease Day. This international…Feb 29Feb 29
Karen VasquezKeep Doing It’s not going to be easy, but it will be worth it.I need to exercise: Not just because I have a rare disease or two, or to look good, or to keep my lungs working- we all have to work hard…Feb 28, 2018Feb 28, 2018
Andy HuntShots Anyone?Sometimes you have to do something that makes a child cry even though it is good for them. That’s why I make Ella watch Dallas Cowboys’…Feb 29Feb 29
Marybeth CamboniHow Rare and Beautiful It Is To Even ExistEvery child with a neuromuscular disease is invited to attend MDA Camp, sponsored by the Muscular Dystrophy Association, starting at age 8…Feb 29
InHealth decodedbyInvitae® (a Labcorp company)Rowan’s story: How genetic testing for a rare condition brought answers and communityBaby Rowan’s seizures mystified his doctors until genetic testing revealed their source and led his family to a life-changing communityFeb 22
WeTrials Inc.Rare Disease Day: A Global Movement for ChangeEvery year, on the last day of February (29th in leap years), the world comes together to recognize Rare Disease Day. This international…Feb 29
Karen VasquezKeep Doing It’s not going to be easy, but it will be worth it.I need to exercise: Not just because I have a rare disease or two, or to look good, or to keep my lungs working- we all have to work hard…Feb 28, 2018
Andy HuntShots Anyone?Sometimes you have to do something that makes a child cry even though it is good for them. That’s why I make Ella watch Dallas Cowboys’…Feb 29
Stephen V. SmithRethinking the Wind“And the wind that blows the candles out, well it also fans the flame.” This is a line from one of my favorite singer/songwriters, Pierce…Feb 28
Will GreeneRare genetic disease can strike your family tooWhen our son was diagnosed in early 2022 with Prader-Willi syndrome (PWS), a rare and serious genetic disease with a frightening prognosis…Feb 24
Marybeth CamboniJacquelineMy daughter Jacqueline was born on January 20, 2015. I thought something was wrong with her when she was a few months old. She was…Feb 12
