The Mastocytosis Society's mission is to foster research, education, and advocacy for our patients, their families, caregivers and physicians. TMS aspires to make content easier to find and share important resources related to our cause. Founded in 1995, TMS has sought to fill a massive void with some answers to the many questions about this rare disease. We hope you find the provided information and resources beneficial and ask that you support us in our efforts to raise awareness and serve our Mastocytosis community.
2016 VIRTUAL WALKATHON
Please participate in our 10th Annual Virtual Walk-A-Thon Fundraising effort, as part of efforts to fund advocacy, outreach, and awareness for our patients, family members, friends and medical professionals.
This year's walkathon is in a virtual format so that everyone can support and share with all of the love and commitment and none of the rigors associated with an actual walking event.
More people can participate without the constraints of travel, weather and other limiting factors.
Mast cell diseases include mastocytosis, Where the body produces too many mast cells, and mast cell activation syndrome (MCAS), where even the normal number of mast cells are too easily activated by a trigger to release their contents, called mediators. These mediators can cause a variety of unpredictable symptoms in both children and adults, including skin rashes, flushing, abdominal pain, bloating, nausea, vomiting, headache, bone pain and skeletal lesions, and anaphylaxis. Triggers can be heat, cold, stress (physical or emotional), perfumes or odors, medications, insect stings, and foods. These symptoms are treated with medications including antihistamines, mast cell stabilizers, and leukotriene inhibitors, while anaphylaxis is a medical emergency requiring epinephrine. Mastocytosis can affect skin and internal organs such as the bone marrow, gastrointestinal tract, liver, and spleen. Most patients with mastocytosis have cutaneous (skin) or indolent (benign) systemic forms, but aggressive disease can occur, which may require chemotherapy.
A diagnosis of mastocytosis is confirmed by a bone marrow or skin biopsy. MCAS patients do not fulfill all criteria for mastocytosis but exhibit symptoms, may or may not have increased measurable mast cell mediators (commonly tryptase, histamine or its metabolites) during or shortly after an attack and do respond to the same medications that patients with mastocytosis do.
For more detailed information on Mastocytosis and Mast Cell Diseases please refer to our Research Page (Coming Soon!!!)
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6-JUL-2015 - The Hill
Stepping Up The Fight
#CuresIn4Words: Stepping Up The Fight
Leading Rare Disease Advocates: #Cures2015 will “help ensure that no disease is too rare to deserve treatment.”
The 21st Century Cures Act aims to help scientists, innovators, and regulators deliver treatments and cures for the thousands of diseases without one, providing hope to patients and loved ones. The legislation will modernize our health care system for patients and give them a voice at the table in their battle with disease and illnesses.
Patricia Beggatio, Mastocytosis Society board member and rare disease patient advocate, and Dr. Emil Kakkis, President of the EveryLife Foundation for Rare Diseases and CEO of Ultragenyx Inc., write in The Hill, “This historic legislation is the best opportunity for treatment which brings hope to millions of patients and families. Researchers know more than ever about rare diseases, but that knowledge desperately needs to be translated into life-saving therapies. Patients, and their loved ones, simply cannot afford to wait any longer. Together, we can step-up the fight against rare diseases and in doing so, help ensure that no disease is too rare to deserve treatment.”
Congress steps up fight against rare diseases
By Patricia Beggatio and Emil Kakkis
Congress did something amazing last month and almost no one in the media is talking about it. The powerful House Energy & Commerce Committee, which has jurisdiction over a variety of issues including healthcare, passed a bill that could help millions of patients. And they did it in a bipartisan way.
The bill, now called the 21st Century Cures Act, was the culmination of an effort led by Reps. Upton (R-Mich.) and DeGette (D-Colo.). It passed with unanimous support out of committee, which is no small feat in an era of seemingly endless partisanship. The bill will soon head to the House floor for a vote.
The bill itself contains a wide variety of provisions that are top priorities for patients, especially patients in the rare disease community, whom we represent. There are over 7,000 rare diseases, which collectively affect 30 million Americans, about 10 percent of the U.S. population. Sadly, 95 percent of rare diseases have no FDA-approved treatments. Why? Because our nation’s health agencies remain underfunded and small patient populations typically do not attract investment from the private sector. In short, patients with rare diseases have been chronically underserved by the U.S. health system at every turn.
But 21st Century Cures can help fix this by providing funding for the Food and Drug Administration (FDA) and the National Institutes of Health (NIH) and putting in place new incentives to foster innovation. In doing so, this legislation could help ensure that all patients, regardless of disease prevalence, have the opportunity to obtain treatment.
One of us has a husband and two daughters suffering from a rare disease called mast cell activation disorder, an immune system disease that can result in debilitating and potentially life-threatening symptoms. We have been fortunate to live in DC and have access to doctors and researchers, but even so, the challenges we have faced are daunting and forever life-changing. We live in constant of fear of a health disaster. Insurance companies routinely fail to reimburse. In essence, our family is constantly walking through a field of health and financial landmines. And we need Congress’s help. This historic legislation is the best opportunity for treatment which brings hope to millions of patients and families like mine.
Looking at this from the lens of a physician and drug developer, we’ve observed firsthand the difficulty in developing drugs for rare disease patients. Researchers know more than ever about rare diseases, but that knowledge desperately needs to be translated into life-saving therapies. Patients, and their loved ones, simply cannot afford to wait any longer. We call on advocates everywhere to take a stand, contact their representatives in Congress today, and urge them to pass the 21st Century Cures Act. Together, we can step-up the fight against rare diseases and in doing so, help ensure that no disease is too rare to deserve treatment.
Your input is crucial in our quest to bring Ketotifen (Zaditen – brand name) into the US market! We have a few of our physicians meeting with a representative of a pharmaceutical company who is interested in bringing ketotifen to the US. The meeting is this Wednesday, May 21, and has just been arranged last minute. To that end, we need some input for the discussion. Please answer the following questions.
Please respond to the following questions by Tuesday, May 20th:
1. Are you currently taking Ketotifen (or Zaditen – brand name)?
2. If yes, how are you currently ordering/receiving your prescription?
a. Through Personal Importation (following FDA protocol)
b. Through Compounding Pharmacies (within the US)
c. Other (please explain)
3. What is the cost of the medication?
a. Cost (of monthly or three month supply)
b. Is the cost covered by your insurance company?
4. Dosage for the day
5. Are you answering this mini survey from Facebook?
All personal information will remain anonymous. Results/data will be shared during discussions with potential pharmaceutical companies that are showing interest in trying to bring the product to US market. We need to stand up together and be counted…these pharmaceutical companies need to see the number of people affected by Mast Cell Disorders that are being helped by a prescription medication that is not yet available in the US!
Please send all responses to firstname.lastname@example.org (with the subject: Ketotifen Questionnaire) by Tuesday, May 20th.
In honor of Rare Disease Day February 28, 2014 and
The 20th Anniversary of The Mastocytosis Society, Inc.
We are sponsoring a Membership Drive with a great offer:
A full year TMS Membership, normally $35.00, now reduced to $20.00 until 4/30/2014!
You can take advantage of this offer in one of several ways:
- Obtain a first time, brand new membership for this price!
- Renew your membership, regardless of when you last paid, and your membership will be extended one year from its current expiration date!
- Give a gift membership to a friend, family member or physician!
- If you are an Angel Fund recipient, you may extend your membership for another year for this price!
Benefits of membership include a vote in Society elections, a quarterly newsletter, The Mastocytosis Chronicles, as well as a personal copy of the Special Edition of The Mastocytosis Chronicles for Healthcare Professionals, discounts on annual meeting fees, including our exciting 20th Anniversary Celebration at the Mayo Clinic September 17-20, 2014, access to patient care coordination which includes help reviewing your symptoms and helping to manage your referral to an appropriate mast cell treatment center if indicated, and more benefits for members only are being planned! In addition, the more members we have, the more powerful we are as an organization effecting change on behalf of all patients with mast cell disorders! So, do your part to honor Rare Disease Day and join TMS!
Every member or potential member can benefit by taking advantage of this Membership drive! How?
- Go to www.tmsforacure.org and click on the Join button on the home page!
- Or, if you prefer to send a check by US Mail, or international mail, please make out the check to The Mastocytosis Society, Inc. for $20.00 and Mail to:
The Mastocytosis Society, Inc.
P.O. Box 129
Hastings, NE 68902-0129.
We can make an enormous difference if we can raise our membership numbers, which are almost at 600 for the first time ever, to 1000 or greater! Let’s do it! Send in your $20.00 now!
22-DEC-2013 - Boston Center of Excellence for Mastocytosis
Boston Center of Excellence for Mastocytosis
Season’s Greetings from all of us at TMS!
We have been contacted by Dr. Mariana Castells and the staff at the Boston Center of Excellence for Mastocytosis. It appears that there has been inappropriate use of their emergency paging system by some members of TMS. If you need to make an appointment, please call the clinic at 617-732-9850. If you are considering whether or not you should be seen at the Center and would like some help clarifying that from TMS, first become a member ($35.00 per year and free with an angel fund membership for those with financial difficulties), and then contact Valerie Slee, RN, BSN or Mishele Cunningham, RN, BSN at email@example.com. Care coordination services will only be available for TMs members starting January 1, 2014, but there is no impediment to anyone becoming a member. You can become a member by going to our web site www.tmsforacure.org or by sending a check made out to Jim McKee, Treasurer, The Mastocytosis Society, PO Box 129, Hastings, NE 68902-0129.
The Boston Center of Excellence Physicians are restricted by HIPPA laws about how they can function. The physicians cannot speak to any patient who is not registered at Brigham and Women’s and whom they have not seen yet, therefore, it is not possible to call and speak to Dr. Castells and Dr. Akin or any other Brigham physician in advance of a first appointment. Once you have seen them and become their patients, then you may contact them. In an emergency after hours, your physician can call the hospital and page the allergy fellow on-call for a professional physician to physician consultation on how to treat you, but no one can legally directly page Dr. Castells, Dr. Akin, etc. unless you have been instructed to do so by them after having seen them as patients.
Our relationships with these physicians are very important to the care we receive now and in the future. Dr. Castells was very gracious in her request. Please let us all comply with the same grace. Thank you. Val
Valerie M, Slee, RN, BSN, Chair
Patient Referral Coordinator
Liaison, Medical Advisory Board
Board of Directors
The Mastocytosis Society, Inc.