RARE Artist

Washington, DC

Artists

All Artists Aanya Khattar - Family Member of Someone with an Arteriovenous Malformation Adare - Ehlers Danlos Syndrome + 18 comorbidities Alex Yiu - IRF2BPL Disorder/NEDAMSS Ali SP - Hypocomplementemic Urticarial Vasculitis Alice Arkell - Congenital Central Hypoventilation Syndrome Amanda Van Eps - Subependymoma, Ehlers Danlos Syndrome Amy Curran - GNE Myopathy Arthur Oliveira - Secondary Adrenal Insufficiency Audrey Chang - DDX3X Syndrome (Sibling) Ayan Kalra - Myelin Oligodendrocyte Glycoprotein Antibody Disease Beatriz Fraga - Neurosarcoidosis Benjamin Cavanagh - Mucopolysaccharidosis type IV (MPS IVA) Branden Lim - Spinal Muscular Atrophy Brenna Bruck - Fragile X Syndrome Carino Imbrogno - Ehlers-Danlos Syndrome Caroline Lewis - Cystic Fibrosis Casey Witte - Albinism (OCA2 Variant) Chloe Hoover - Dysautonomia Christina Schulz - Fibrous Dysplasia Clarissa Castillo-Ramsey - Adductor Spasmodic Dysphonia Dana Simmons - Cyclic Vomiting Syndrome Dani Wieczorek - Ectrodactyly DaNice D Marshall - Granulomatosis with Polyangiitis Elizabeth Hoverman - Ectrodactyly-Ectodermal Dysplasia-Clefting (EEC) Syndrome Ella Palinchak - Alagille Syndrome Ella Balasa - Cystic Fibrosis Ella Tee - Early Onset Parkinson's Disease (Family Member) Emma Schaberg - Marfan Syndrome Emmalyn Hudson - Glutaric Aciduria/Acidemia Type 1 Eugenie Hsu - Craniopharyngioma (Caregiver) Eva Agus - Nasopharyngeal Carcinoma G Shellye Horowitz - Hemophilia A and Superior Mesenteric Artery Syndrome Georgia Markellou - Mayer-Rokitansky-Kuster-Hauser MRKH Type II Gillian Sapia - Galactosemia (Caregiver) Gisela Victoria - Abetalipoproteinemia Grey Pomeroy - Grijs DeKruif - Hypermobile Ehlers-Danlos Syndrome Jessica Miles - Classical Type Ehlers Danlos Syndrome (COL5A2 gene mutation) resulting in a permanent ostomy Jill Gassman Zullo & Claudio Zullo - Sinonasal Mucosal Melanoma (Patient and Caregiver) Joanna Mieleszko - Lymphangioleiomyomatosis Joyce Fitz - Schwachman-Diamond Syndrome Kate Thompson - Epidermolysis Bullosa Kelley Hennessy - Friedreich’s Ataxia Krista Webb - Usher Syndrome Laura Romano - Classical-like Ehlers-Danlos Syndrome Lena Smith - Granular Corneal Dystrophy Lia Ottinot - Sickle Cell Anemia Lonnie Lu Rivera - Laryngeal Cleft, Mitochondrial Disease Madison Cooke - Rocky Mountain Spotted Fever Maria Fernanda Llave - Spinal Muscular Atrophy Type 2 Marshall Kopacki - Paroxysmal Nocturnal Hemoglobinuria Mary Payton Zajicek - Visual Snow Syndrome Mary Sott - Cushing's Syndrome leading to Addison's Disease Maya Rivera - Mitochondrial Disease Mayme Killeen - Friedreich's Ataxia Megan Howard - Behçet’s Disease and Idiopathic Hypersomnia Melinda Habingreither - Gangliosidosis (GM1) Miranda Walker - Neuromyelitis Optica Nell Choi - Neuromyelitis Optica Nell Choi - Neuromyelitis Optica Spectrum Disorder Nicole Thrower - Phelan McDermid Syndrome Niki Lake - Moyamoya and Undiagnosed Oonagh Newman - Systemic Juvenile Idiopathic Arthritis & Interstitial Lung Disease Rachel Shalit - Gaucher Disease & Undiagnosed Ruofan Gu - Marquio Rylie Erbacher - Spinal Muscular Atrophy, Type 2 Sarah Dillon - Thyroid Eye Disease Sarah Donoughue - Pulmonary Hypertension/lung transplant recipient Sarah Bailey - Ushers Syndrome Type 2A Sarah Larkins - Arteriovenous Malformation Sati Cooper-McCann - Stickler Syndrome (COL2A1) with Hypermobility Seth Bailey - Infantile Spasms Solana Acuna - Severe Combined Immunodeficiency (SCID) Sophia Sieber-Davis - Friedreich’s Ataxia at 13 and Osteosarcoma at 19 Sophie Seaver - MED13L (Sibling) Sylvie Leyerle - Episodic Ataxia Theresa Alo - Indolent Systemic Mastocytosis Tim Chambers - Usher Syndrome Waiyee Hui - Antisynthetase Syndrome Wes Burian - Fabry Disease Zanny Nicholas - Complex Regional Pain Syndrome