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Rare Artist
Washington, DC
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Artists
Solana Acuna - Severe Combined Immunodeficiency (SCID)
Eva Agus - Nasopharyngeal Carcinoma
Theresa Alo - Indolent Systemic Mastocytosis
Alice Arkell - Congenital Central Hypoventilation Syndrome
Jenn Arnold - Hidradenitis Suppurativa
Seth Bailey - Infantile Spasms
Sarah Bailey - Ushers Syndrome Type 2B
Ella Balasa - Cystic Fibrosis
Brenna Bruck - Fragile X Syndrome
Wes Burian - Fabry Disease
Benjamin Cavanagh - Mucopolysaccharidosis type IV (MPS IVA)
Tim Chambers - Usher Syndrome
Nell Choi - Neuromyelitis Optica
Nell Choi - Neuromyelitis Optica Spectrum Disorder
Madison Cooke - Rocky Mountain Spotted Fever
Sati Cooper-McCann - Stickler Syndrome (COL2A1) with Hypermobility
Amy Curran - GNE Myopathy
Sarah Dillon - Thyroid Eye Disease
Sarah Donoughue - Pulmonary Hypertension/lung transplant recipient
Adare - Ehlers Danlos Syndrome + 18 comorbidities
Rylie Erbacher - Spinal Muscular Atrophy, Type 2
Beatriz Fraga - Neurosarcoidosis
Ruofan Gu - Marquio
Melinda Habingreither - Gangliosidosis (GM1)
Kelley Hennessy - Friedreich’s Ataxia
Chloe Hoover - Dysautonomia
Elizabeth Hoverman - Ectrodactyly-Ectodermal Dysplasia-Clefting (EEC) Syndrome
Eugenie Hsu - Craniopharyngioma (Caregiver)
Emmalyn Hudson - Glutaric Aciduria/Acidemia Type 1
Waiyee Hui - Antisynthetase Syndrome
Carino Imbrogno - Ehlers-Danlos Syndrome
Aanya Khattar - Family Member of Someone with an Arteriovenous Malformation
Marshall Kopacki - Paroxysmal Nocturnal Hemoglobinuria
Niki Lake - Moyamoya and Undiagnosed
Sylvie Leyerle - Episodic Ataxia
Branden Lim - Spinal Muscular Atrophy
Maria Fernanda Llave - Spinal Muscular Atrophy Type 2
Darienne Majeske - Fragile X Syndrome
Georgia Markellou - Mayer-Rokitansky-Kuster-Hauser MRKH Type II
DaNice D Marshall - Granulomatosis with Polyiingitis
Jessica Miles - Classical Type Ehlers Danlos Syndrome (COL5A2 gene mutation) resulting in a permanent ostomy
Oonagh Newman - Systemic Juvenile Idiopathic Arthritis & Interstitial Lung Disease
Zanny Nicholas - Complex Regional Pain Syndrome
Arthur Oliveira - Secondary Adrenal Insufficiency
Lia Ottinot - Sickle Cell Anemia
Ella Palinchak - Alagille Syndrome
Grey Pomeroy -
Lonnie Lu Rivera - Laryngeal Cleft, Mitochondrial Disease
Maya Rivera - Mitochondrial Disease
Laura Romano - Classical-like Ehlers-Danlos Syndrome
Gillian Sapia - Galactosemia (Caregiver)
Emma Schaberg - Marfan Syndrome
Christina Schulz - Fibrous Dysplasia
Sophie Seaver - MED13L (Sibling)
Sophia Sieber-Davis - Friedreich’s Ataxia at 13 and Osteosarcoma at 19
Belinda Silva - Guillain-Barre Syndrome
Dana Simmons - Cyclic Vomiting Syndrome
Lena Smith - Granular Corneal Dystrophy
Ali SP - Hypocomplementemic Urticarial Vasculitis
Nicole Thrower - Phelan McDermid Syndrome
Gisela Victoria - Abetalipoproteinemia
Miranda Walker - Neuromyelitis Optica
Krista Webb - Usher Syndrome
Casey Witte - Albinism (OCA2 Variant)
Alex Yiu - IRF2BPL Disorder/NEDAMSS
Solana Acuna - Severe Combined Immunodeficiency (SCID)
Eva Agus - Nasopharyngeal Carcinoma
Theresa Alo - Indolent Systemic Mastocytosis
Alice Arkell - Congenital Central Hypoventilation Syndrome
Jenn Arnold - Hidradenitis Suppurativa
Seth Bailey - Infantile Spasms
Sarah Bailey - Ushers Syndrome Type 2B
Ella Balasa - Cystic Fibrosis
Brenna Bruck - Fragile X Syndrome
Wes Burian - Fabry Disease
Benjamin Cavanagh - Mucopolysaccharidosis type IV (MPS IVA)
Tim Chambers - Usher Syndrome
Nell Choi - Neuromyelitis Optica
Nell Choi - Neuromyelitis Optica Spectrum Disorder
Madison Cooke - Rocky Mountain Spotted Fever
Sati Cooper-McCann - Stickler Syndrome (COL2A1) with Hypermobility
Amy Curran - GNE Myopathy
Sarah Dillon - Thyroid Eye Disease
Sarah Donoughue - Pulmonary Hypertension/lung transplant recipient
Adare - Ehlers Danlos Syndrome + 18 comorbidities
Rylie Erbacher - Spinal Muscular Atrophy, Type 2
Beatriz Fraga - Neurosarcoidosis
Ruofan Gu - Marquio
Melinda Habingreither - Gangliosidosis (GM1)
Kelley Hennessy - Friedreich’s Ataxia
Chloe Hoover - Dysautonomia
Elizabeth Hoverman - Ectrodactyly-Ectodermal Dysplasia-Clefting (EEC) Syndrome
Eugenie Hsu - Craniopharyngioma (Caregiver)
Emmalyn Hudson - Glutaric Aciduria/Acidemia Type 1
Waiyee Hui - Antisynthetase Syndrome
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