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Tuesday, August 19, 2014

2014 Hayden's Hope Fundraiser Presents "Girls with Grit"

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Click here to donate to the Hayden's Hope Girls with Grit Fundraiser . 2014  H A Y D E N’ S   H O P E            F U N D R A I S ...
Sunday, July 27, 2014

Clementia Pharmaceuticals received U.S. Orphan Drug Designation for Palovarotene for the treatment of FOP.

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The news just keeps getting better!   "The IFOPA is pleased to share news, that Clementia Pharmaceuticals received U.S. Orphan Drug D...

Clinical Drug Trial Announcement

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An amazing day!! July 14th was a historic day in the FOP community. We at the IFOPA are thrilled to see Clementia’s trial start. This is a...

Hayden's Hope Awarded Jeannie Peeper Outstanding Community Involvement Award

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Outstanding Community Involvement Award is presented to an organization, family or individual of promoting and maintaining a high ...
Thursday, June 26, 2014

25th Anniversary of the International FOP Association

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Fibrodysplasia Ossificans Progressiva (FOP) is one of the rarest, most disabling genetic conditions known to medicine. It causes bone to for...
Sunday, June 15, 2014

Tis the season

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One of the proudest moments of being a parent is watching our children graduate, whether from kindergarten, 5th grade, 8th grade, high scho...
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Friday, May 16, 2014

Elsa's Amazing Birthday Present to Hayden

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Your children can surprise you in the most amazing ways and at the most unexpected times.  Thank you Elsa Lilli for making Hayden's ...