Basic Information First Name / Nickname * (Displayed on the map, can be initials if preferred) Role * Select Role Patient Caregiver Family Advocate Supporter Healthcare Professional Rare Disease * Select Rare Disease NF1 – Neurofibromatosis Type 1 NF2 – Neurofibromatosis Type 2 aHUS – Atypical Hemolytic Uremic Syndrome PNH – Paroxysmal Nocturnal Hemoglobinuria SMA – Spinal Muscular Atrophy DMD – Duchenne Muscular Dystrophy ALS – Amyotrophic Lateral Sclerosis Thalassemia (rare types) Gaucher Disease Pompe Disease Fabry Disease MPS – Mucopolysaccharidosis (all subtypes) Huntington’s Disease Cystic Fibrosis Pulmonary Hypertension (rare forms) Hemophilia (rare clotting disorders) Alport Syndrome Ehlers-Danlos Syndrome (rare subtypes) Undiagnosed / Still Searching Other (please specify) General Location * (City / State or Region, not exact address) Connection Preferences Open to Connecting? * Select an option Yes No Maybe Later Preferred Way to Connect * Select preferred way WhatsApp Group Email Social Media None Comfort Level * Select Comfort Level Share resources only Open to chat Open to meet-ups Support & Needs What support are you seeking? * Select support type Emotional Support Medical Info Daily Care Tips Advocacy Professional Expertise Just Listening Privacy & Safety I agree to have my profile shown on RareLink's public map (general location only, no personal address) Optional Contact Info (WhatsApp number, email, or Instagram) Extras Short Bio / Note (e.g., "Parent of a child with NF1, open to connecting with other families") Submit
