Other US Mastocytosis Web Sites

• Mastokids (for parents of and children with mastocytosis
• Kansas Mastocytosis Support
• Oklahoma Mastocytosis Society
• Olive Clayson’s Mastocytosis Web Page

Mastocytosis Web Sites/Support Outside the US

• The UK Mastocytosis Support Group
• Canada Mastocytosis Support Forum
• Masto Chat Line in Dutch (Owner: Ivo Bouwmans)*
• Mastozytose Internet Selbsthilfegruppe (Andrea König)
• Mastozytose e.v. (German website about Mastocytosis)
• European Competence Network on Mastocytosis (ECNM)
• Urticaria Pigmentosa — DermNet NZ

Mastocytosis/Mast Cell-related Medical/Researcher Web Sites/Information

• Overview of Mastocytosis (National Institute of Allergy and Infectious Diseases, NIH)
• U-M Mastocytosis Research (Dr. Cem Akin)
• Molecular Immunopharmacology & Drug Discovery Laboratory (Dr. Theoharides’ Web Site)
• Myeloproliferative Diseases (Dr. Srdan Verstovsek’s Web Site)

E-mail Lists/Forums/Chats Related to Mast Cell Disease

• Online TMS Support Group — Yahoo Health Group (Owner: Wanda Hermann)
• Online TMS Pediatric Planning Committee Group — Yahoo Health Group (Owner: Kolleen Barlow on behalf of TMS). Parents and caregivers of children with mastocytosis, UP, DCM, IA and MCAD are welcome to join.
• Medical Question/ Answer Forum MASTO-MED LIST (Owner: Ivo Bouwmans)* **
• General Chat Line MASTO-COM (Owner: Ivo Bouwmans)* **
• MASTO-CHILD Chat Line for pediatric mastocytosis (Owner: Ivo Bouwmans)* **
• Idiopathic Anaphylaxis Support Group — Yahoo Health Group (Owner: Candace Van Auken)**
• Support Group for Parents and Caregivers of Children with Idiopathic Anaphylaxis — Yahoo Health Group (Owner: Candace Van Auken)**
• Masto — Mastocytosis — Yahoo Health Group (Owner: Jackie Vaughan)**
• Mastocytosis Support Group — Yahoo Health Group

Books by Mastocytosis Patients

• www.frannierose.com (Frannie Rose)

Blogs by Mastocytosis/Mast Cell Disorders Patients

• Living with Mastocytosis. By BlueKat: "I'll be posting many, many links about mastocytosis on this site. Some of the more general will be in the Info Links above. Some of the more medical and/or esoteric will be below, beginning with some basics for my doc, or your doc, or any doc wanting a quick understanding."
• Living with Mastocytosis: Life with a Chronic Illness Isn't All about Spoons and Complaining. By Bridget: "30 year old woman living with a rare neoplastic disease called Systemic Mastocytosis."
• Freudian Slips. By Joe Tornatore: "My blog Freudian Slips has over 60,000 hits and I have been writing since 2004.  I speak about masto but not exclusively.  readers can quickly get to my masto articles by typing in the search engine 'mastocytosis'  this delivers all the relevant articles."
• Mast Cell Disorders. By Deboarh Wallack: "...This is my story, written with the hope that it will inspire those living with mast cell disease or any other chronic illness to always stay positive and know that you can take matters into your own hands to help yourself."

Social Security/ Disability Information

• Social Security/ Disability Information

Miscellaneous Links

• How to Use an EpiPen (Epinephrine) Auto-Injector. (Dey, L.P.)
• American Medical ID, a partner with TMS.
• MedicAlert
• National Organization for Rare Disorders (NORD)
• Medline Plus — National Institute of Health (NIH)
• US National Library of Medicine — National Institute of Health (NIH)
• International Chronic Urticaria Society (ICUS)

* Our deep gratitude to Ivo for creating and maintaining these forums & chats.
** These groups are in no way affiliated with TMS.