Archives

The Poet’s Corner

Jun 29, 2017

Welcome to The Poet’s Corner We would like to give members of our mast cell disorder community an opportunity to share their poems on this site. If you would like to submit a poem, please email it to secretary@tmsforacure.org. Ode to a Mast Cell Flare by Kathy Bell, 2016 My skin, it itches, my eyebrows, […]

full story

Rydapt© Approved for Advanced Systemic Mastocytosis Variants!

Apr 28, 2017

The Mastocytosis Society, Inc. is very excited to announce to our mast cell disorder community that the Food and Drug Administration (FDA) has approved Novartis’ drug, Rydapt©, (midostaurin, previously referred to as PKC412) for the treatment of advanced forms of systemic mastocytosis [aggressive systemic mastocytosis (ASM), SM with an associated hematologic neoplasm (SM-AHN), formerly called […]

full story

Mylan Provides Update on EpiPen® Recall

Apr 04, 2017

Mylan N.V. (NASDAQ, TASE: MYL) today announced that Meridian Medical Technologies, a Pfizer company and Mylan’s manufacturing partner for EpiPen® Auto-Injector, has expanded a voluntary recall of select lots of EpiPen (epinephrine injection, USP) and EpiPen Jr® (epinephrine injection, USP) Auto-Injectors to now include additional lots distributed in the U.S. and other markets in consultation […]

full story

AWaRDS Study: Adults with Rare Disorders Support

Apr 03, 2017

Preliminary AWaRDS Results: Bogart KR, Irvin VL. Health-related quality of life among adults with diverse rare disorders. Orphanet J Rare Dis. 2017;12(1):177. BACKGROUND: In partnership with the National Organization for Rare Disorders, this will be the first large-scale study about the information and psychosocial support needs of people living with rare disorders. The purpose of this research study is to assess these needs, […]

full story

Mast Cell Disorder Patient Survey: March 23 – April 3, 2017 (Survey is Now Closed)

Apr 02, 2017

Perceptions of Patients with Mast Cell Disorders (Mastocytosis and Mast Cell Activation Syndrome) and the Physicians Who Care for Them In collaboration with Georgetown University’s Biomedical Graduate School, The Mastocytosis Society (TMS) invited participation in a research study titled “Perceptions of Patients with Mast Cell Disorders (Mastocytosis and Mast Cell Activation Syndrome) and the Physicians […]

full story

April 2017 Kansas City Support Group Meeting

Apr 02, 2017

SUPPORT GROUPS …and what they can do for you! Have you ever thought about attending a support group meeting in your area?  Then you thought, I’m not sure about going because I’m not sure what to expect or people may not understand what I’m going through. . . . . . . . The Kansas […]

full story

Patient Advocacy

Apr 01, 2017

National Organization for Rare Disorders, Inc. (NORD) 6/22/2017 “Today, the Senate #HealthcareBill was released. After reviewing the discussion draft of the Better Care Reconciliation Act of 2017 (BCRA), NORD finds that it fails to meet several of NORD’s Principles for Healthcare Reform (http://bit.ly/2sZhUtU). As the bill is currently written, we are urging both Republican and […]

full story

BOD Meeting Minutes

Apr 01, 2017

   

full story

Helpful hints for living with the symptoms of mast cell disorders

Feb 02, 2017

“Proper self-care is not a luxury. It is as necessary to my disease management as my meds.” Helpful hints for living with the symptoms of mast cell disorders shared by patients living with these disorders: Overall Stability Being Prepared Medical Alert Jewelry and Devices Eating at home and outside of the home Bone Pain Fatigue […]

full story

Princess Among Soldiers

Feb 01, 2017

Article By Pam Hodge I have cried a million tears and asked why a million times, never to get the answer.  At times I have just held on because that is all I could do. I thought at times our family would crumble because of lack of support. I have gone through the stages of […]

full story