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Posted by on May 11, 2013 in Resources, Websites |

Useful Websites

Official Societies And Organisations

The Mastocytosis Society

The Mastocytosis Society is a 501(c)3 nonprofit organization dedicated to supporting patients affected by Mastocytosis or Mast Cell Activation Disorders as well as their families, caregivers, and physicians through research, education, and advocacy.

Mastocytosis Society Canada

We are the leading organization in Canada, committed to helping people with Mastocytosis and related mast cell disorders by:-

  • Providing compassionate counselling & mutual support across Canada;
  • Educating & Informing patients, caregivers, the Canadian public & healthcare providers;
  • Maintaining referral listings of healthcare providers & other services;
  • Encouraging & Supporting Research into the causes, controls and cure of Mastocytosis and related Mast cell disorders

The Australasian Mastocytosis Society (TAMS)

The Australasian Mastocytosis Society (TAMS) has been created as an advocacy, education and support body for those throughout Australasia who suffer from or care for those with a Mast Cell Activation Disorder (MCAD) including Systemic Mastocytosis, Cutaneous Mastocytosis, Mast Cell Activation Syndrome (MCAS). TAMS has been established due to the overwhelming need for sufferers and their supporters to find a local voice and active support network.

The UK Mastocytosis Support Group

European Competence Network On Mastocytosis

The European Competence Network on Mastocytosis, ECNM, is a ´non-profit´ cooperative initiative of a group of scientists and clinicians in Europe who are devoted to merge their efforts in an attempt to improve recognition, diagnosis, and therapy in patients with mastocytosis.

Specific aims in the ECNM are to provide the best available Information for patients and doctors, provide access to important diagnostic tests for all patients, to establish standards for the diagnosis and treatment of mastocytosis, to establish Reference Centers and Centers of Excellence in Europe, and to facilitate referrals to specialists in these centers for all patients, either through doctor-doctor telenet-contact, or direct referral if required.

Association Francaise Pour Les Initiatives De Recherche Sur Le Mastocyte Et Les Mastocytoses

L'Afirm, Association Francaise pour les Iniatiatives de Recherche sur la Mastocyte et les Mastocytoses, à été créée en 1999. Aujourd'hui elle regroupe plus de 600 patients atteint de Mastocytose.

Allergy UK Information on Allergies

Allergy UK is the leading national charity dedicated to supporting the estimated 21 million allergy sufferers in the UK. We provide a dedicated helpline, support network and online forum for those with allergy and intolerance.

International Chronic Urticaria Society

The International Chronic Urticaria Society (ICUS) supports a cyber-society of people with chronic urticaria (CU), or hives. Chronic hives differ from acute hives in that the cause is not often determined, and many people suffer from CU for years at a time.

We have an active and very supportive email list. Through the list and its very knowledgeable members, we have gathered a large amount of useful information about this often baffling disorder.

Support Groups

Facebook Groups

Fans of Dr Theoharides

Questions for Dr. Theoharides on autism, mast cells, and NeuroProtek can be asked here and he will post weekly updates on his research.

Mastocytosis – A Holistic Approach

This is group, open to all persons suffering from Mastocytosis, their family, caregivers and others that care about Mastocytosis and thinking out of the box. This group will attempt to discuss various holistic methods and approaches to the disease of Mastocytosis. This group also considers that Mastocytosis affects not only the physical being of persons affected, but also the emotional aspects. We will approach things in a serious, but lighthearted manner.

Systemic Mastocytosis Discussion Group

This is a discussion and support group for those who have a diagnosis of systemic mastocytosis

Fans of Algonot/Neuroprotek-Anti-Inflammation

We are dedicated to Supporting Dr. Theo, and his causes- Algonot/Neuroprotek and his work with Mastocytosis, MCAS (Mast Cell Activation Disorder), Fibromyalgia, and Autism. Devoted to diseases of inflammation and integrative treatments.

My Crazy Life With Mast Cell Disorder

“It helps to know we are not alone in our struggle at the time or on our path in this battle. Life certainly changes but it does go on. Finding a way forward, forging ahead and then finding balance in between is key.”-Jennifer McCoy

This OPEN group is to encourage each other, family and friends. The hope is to share the bizarre stories that we all have. Many of us have been labeled as crazy or hypocrondriacs. By sharing these stories with family and friends, I am hoping that instead of jumping to conclusions, they will pause and consider doing research and being a support system! Please share your “craziest” stories!

Mastocytosis Australasia

Discuss Mast cell disease including Mastocytosis and Mast Cell Activation Disorder (MCAD). Managed by The Australasian Mastocytosis Society.

Positive Support For Mast Cell Disorders

This group is for ALL Mast Cell related disorders.

These can include (but not limited to)…

    • Allergic diseases
    • Autoimmunity
    • A variety of sterile inflammatory conditions

Other Support Groups

Online TMS Support

Online TMS support for patients and caregivers. The Mastocytosis Society (TMS) is a non-profit organization dedicated to helping patients, caregivers and medical personnel understand mast cell-related disorders and the impact they have on patient's lives. Mast cell-related disorders include systemic mastocytosis, urticaria pigmentosa, idiopathic anaphylaxis, mast cell activation disorder, diffuse cutaneous mastocytosis, and mastocytoma.

The Elephant Project

This is an international group dedicated to supporting patients who suffer from a specific triad of disorders: Autonomic Dysfunction (such as POTS, NMH, NCS), Mast Cell Disorders (such as Mastocytosis, MCAS) and Hereditary Connective Tissue Disorder (such as EDS, Marfan's)

European Mastocytosis Support Network

The purpose of this website is to offer patients from different countries a common platform to seek and share information about mastocytosis.
The aim is to provide a general introduction about the disease as well as links to various European patient support websites to facilitate human networking.

Mastokids

Welcome to Mastokids.org, where we are raising kids and raising awareness. It is our goal to provide a place where parents and caregivers of children with mastocytosis can come to learn, find support and discover a safe environment to interact with other families.

RareConnect.org

Hosted by trusted patient advocates, this is a place where rare disease patients can connect with others globally.

Mastopedia – The new support network for Adults and Kids

These pages are published by a team of research volunteers and contain excerpts and links to the very latest in research on Urticaria Pigmentosa, Systemic Mastocytosis, Cutaneous Mastocytosis, Mast Cell Activation Disorder, Mast Cell Activation Syndrome, Urticaria Pigmentosa, Idiopathic Anaphylaxis and related information.

Contact A Family

Medical info for families with children with diseases & disabilities

Canadian Masto Support

EDITOR'S NOTE : Restricted to Canadians only (Not Nice 🙁 )

This forum was established to build a database of information and resources for Canadians and to connect medical professionals to enable a support base in Canada.
Our position is that there is no need for Canadian patients to travel to other countries for diagnosis or treatment as Canada has very active and knowledgeable medical experts who are successfully treating and diagnosing mastocytosis and related mast cell disorders.

German Mastocytosis Website

Information and support for patients and relatives. Empowerment and competence of the individual patient. Motivation of the individual to live with a chronic disease. Experiences at national, European and international level. Cooperation with international self-help groups and organizations for mastocytosis patients. Organization of patient seminars with presentations. Promotion of communication between doctor and patient. Cooperation with mastocytosis experts. Visit meetings of the European Research Network on Mastocytosis (ECNM).

Information Sites

Horst Ibelgaufts’ Online version of the Dictionary Of Cytokines

What can I say about this unbelievably detailed site about cytokines?

I have nothing less than a tonne of admiration and awe for this  Ph. D.  and molecular biologist by training, who is single-handedly maintaining details about (nearly) every single cytokine known to man.

Not the easiest of websites to navigate, but certainly the most detailed and precise : 31,400 entries!

Mast Cells For Dummies

Dr Theo's site. Dr. Theoharis Theoharides (Dr. Theo), MS, PhD, MD, FAAAAI, is Professor of Pharmacology, Internal Medicine and Biochemistry and Director of the Molecular Immunopharmacology and Drug Discovery Laboratory at Tufts University School of Medicine has over 20 years of research into mast cells and brain inflammation, 300 published papers, and many patents. Dr. Theo, as he is affectionately called, has shown that mast cells are one of the master regulators of the immune system, directing immune system response and controling inflammation. Dysfunction of mast cell has being found to be the source of many auto-immune diseases and conditions and his research is providing new targets for treatment.

MarrowForums – Excellent for understanding Bone Marrow Biopsy

Marrowforums is a discussion forum for patients with bone marrow failure diseases such as Aplastic Anemia (AA), Myelodysplastic Syndromes (MDS), and Paroxysmal Nocturnal Hemoglobinuria (PNH), and for the people who care about them: their family members and the friends and caregivers who make up their extended family and support system. Professionals who work with these diseases are also welcome.

The Visual MD

EDITOR'S NOTE : Stunning Website! Well worth a visit.

Our mission is to improve health and vitality by empowering people to visually understand and manage their health.
Start improving your life by learning from one of our many Biomarker Test Results, Health Centers, Health Stories, and our Online Community full of people with similar aspirations and questions about health.

iainfoctr -Idiopathic Anaphylaxys Information Centre

EDITOR'S NOTE : An impressive site, arguably the most detailed you'll find on anaphylaxis, histamine and other mast cell related stuff. All by the mighty pen of Candace Van Auken. My role model for meanmymastcells.com!

“What I am is a medical writer, educator and patient advocate. I try to help people who have mast cell-related disorders better understand their complex and often poorly documented diseases. And I'm proud to say that I'm an Allied Health member of the American Academy of Allergy, Asthma & Immunology (AAAAI) as well as a member of the Asssociation for Computing Machinery (ACM).”

Medscape Summary on Systemic Mastocytosis

Exactly what it says on the tin.

Dr Mercola

My motivation, whether you are a member of the Mercola.com community, or have just heard about me for the first time, is to make you as healthy as you can possibly be. This involves:

    • Providing the most up to date natural health information and resources that will most benefit you and,
    • Exposing corporate, government and mass media hype that diverts you away from what is truly best for your health and often to a path that leads straight into an early grave.

Mast Cells, Autism, Inflammation, Dr. T. C. Theoharides, MD PhD
The Low Histamine Chef
Genetics Putting It All Together
DNA from the beginning

Medical Sites

The Cord Blood Center

Our goal is to provide information for expectant mothers and families considering cord blood banking – we want to help you find the right option for your loved ones. Whether you choose private banking for the safety of your family, or public banking to help patients in need of a transplant, The Cord Blood Center is committed to giving you relevant, up-to-date information on benefits, pricing and current research for cord blood stem cells.

MD Anderson – Myeloproliferative  Disorders

As one of the world's largest programs devoted to blood diseases, MD Anderson's Leukemia Center sees many more patients with myeloproliferative diseases (MPD) than other programs or doctors. As a matter of fact, while most oncologists see only a few patients with myeloproliferative disease in their careers, we see hundreds every month. This translates into a remarkable depth of experience and expertise, which we draw upon to give you personalized treatment.

LabQuest Biochemistry Conversion
Jay Clinical Services
NCBI Bookshelf”
PubMed Scientific Database
Linus Pauling Institute
British Medical Journal 
British Society for Haematology
NHS Choices – Mastocytosis
NHS Choices – Chronic Conditions
NHS Choices – Anaphylaxis
NHS Choices – Antihistamines
NHS Choices – Corticosteroid Drugs
NHS Choices – Corticosteroid Tablets and Creams
USA National Library of Medicine & Institute of Health

British Association of Dermatology

DermNet NewZealand – Facts about Skin

DermNet NZ was established by the New Zealand Dermatological Society, the national association of New Zealand registered dermatologists, to provide information about skin diseases, conditions and treatment for patients and their health professionals. Information provided on DermNet NZ should not be regarded as medical advice for individuals.

Product Sites

Dr. Janice Joneja Website – Low Histamine Nutrition Advice
TravelStick – Travel Soap In An Eco-friendly No-Spill Stick
MastCellAware – Fancy Mast Cell T-Shirts – Must See!
Allergypack – Carrying Cases For EpiPens – Many Designs
MedicAlert Foundation – Emergency Medical Info Kits
SOS Talisman (Emergency bracelets & necklaces (UK)
Yellow Cross – Range of Medical Bags/Containers etc.
Lab Tests on line
Medical Marijuana – Mastocytosis Treatment
Ladie’s Medical Jewelry