RARE Community Partner | RARE Disease Community | Boston or Providence | 2016 Running Team |
Cassie (IMO) | Niemann-Pick B | B | Anne Marie O’Connor Smith |
Katie | Prader Willi Syndrome (PWS) | B | Carolyn Ball |
Grace (IMO) | Hypothalamic Harmatomas (HH) | B | Jason Dunklee |
Patrick | Cyclic Vomiting Syndrome (CVS) | B | Justin Hopkin |
Sam | Vanishing White Matter Disease | B | Katherine Rogers |
Max/Christian | Familial Hypocholesterolemia | B | Kyriakos Economides |
Madison | Mucolipidoses II/III (ML Type II/II) | B | Lora Moore |
Sarah | Fibromuscular Dysplasia | B | Martha Stapels |
Kristin | undiagnosed | B | Maureen McLaughlin |
Hayden/Tanner | Mitochondrial Disease | B | Paul Driscoll |
Steven | Muckle Wells syndrome | B | Prajwal Karmacharya |
Kylene | Mast Cell Disease | B | Sarah Batchelder |
Erica | Mucopolysaccharidoses Type 1 (MPS 1) | B | Sarah Yang* |
Erin | Mucopolysaccharidoses Type 1 (MPS 1) | B | Trish Flanagan |
Gina | undiagnosed | P | Andrew Scholte |
Eli | Rothmund Thomson Syndrome (RTS) | P | Baydir Berrahal |
Becca | Mastocytosis/Erythemae Multifromae | P | Betsy Bogard |
Shauna | Rothmund Thomson Syndrome (RTS) | P | Emily Burke |
Christie | Klippel-Feil Syndrome (KFS)_ | P | Erin Santos |
Emma | Gaucher | P | Jen Melanson* |
Quinn (IMO) | Niemann-Pick A | P | Kailene Simon |
AJ | Fibrodysplasia Ossficans Progressiva (FOP) | P | Kurt Swanson |
Bertrand | N-glycanase (NGLY1) deficiency | P | Kyle Kellinhaus |
Noah | Atypical Abetalipoproteinemia/Undiagnosed | P | Laura Benedict |
Tara | Mast Cell Disease | P | Nick Thurlow |
Chris | Congenital Hyperinsulinism (CHI) | P | Patrick Jones |
Jennifer | Phenylketonuria (PKU) | P | Rachel Benedict |
Garrett | Niemann-Pick B | P | Abigail Maderia |
P | Amanda Foisy* | ||
Amanda | Paroxysmal Nocturnal Hemoglobinuria | P | Matthew Maderia |
Amanda | Paroxysmal Nocturnal Hemoglobinuria | P | Michelle Flaherty |
Tara | gne-myopathy (HIBM) | P | Lori Chong |
Andrew | Cyclic Vomiting Syndrome (CVS) | P | Dan Wilkens |
Lindy | Metachromatic Leukodystrophy (MLD) | P | Roger Maderia |
Kristine | Idiopathic Inter-Cranial Hypertension (IIH) | P | Sofia Hu |
John | Eosinophilic Esophagitis (EoE) | P | Kelsey Hoontis |
Abigail | Hypogammagloulinemia/Common Variable Immune Deficiency | P | Jessica Colund |
Heidi | Leukoencephalopathy with Spheroids (HDLS) | P | John Sue |
Amelia | Congenital Hyperinsulinism (CHI) | P | Phillip Maderia |
* Running Team member and RARE Community Partner
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