Meeting slides
Interactive presentation

Indolent Systemic Mastocytosis (ISM): The Patient Experience. (Barbara)

Listen to Barbara share her story about being diagnosed and living with indolent SM.
Interactive presentation

Indolent Systemic Mastocytosis (ISM): The Patient Experience. (Mary Jane)

Listen to Mary Jane share her story about being diagnosed and living with indolent SM.
Interactive presentation

Indolent Systemic Mastocytosis (ISM): The Patient Experience. (Laura)

Listen to Laura share her story about being diagnosed and living with indolent SM.
Suggested Readings

Tyrosine kinase inhibitors in non-advanced systemic mastocytosis.

Akin C. Immunol Allergy Clin N Am. 2023;43(4):743-750.

Patients with mast cell activation symptoms and elevated baseline serum tryptase level have unique bone marrow morphology.

Giannetti MP, Akin C, Hufdhi R, et al. J Allergy Clin Immunol. 2021;147(4):1497-1501.e1.

Avapritinib versus placebo in indolent systemic mastocytosis.

Gotlib J, Castells M, Elberink HO, et al. N Engl J Med Evid. 2023;2(6):EVIDoa2200339.

Patient perceptions in mast cell disorders.

Jennings SV, Slee VM, Zack RM, et al. Immunol Allergy Clin North Am. 2018;38(3):505-525.

Patient-reported outcomes among patients with systemic mastocytosis in routine clinical practice: results of the TouchStone SM patient survey.

Mesa RA, Sullivan EM, Dubinski D, et al. Cancer. 2022;128(20):3691-3699.

Systemic mastocytosis: molecular landscape and implications for treatment.

Monaldi C, De Santis S, Mancini M, et al. Mediterr J Hematol Infect Dis. 2021;13(1):e2021046.

Systemic mastocytosis in adults: 2023 update on diagnosis, risk stratification and management.

Pardanani A. Am J Hematol. 2023;98(7):1097-1116.

Mast cells, mastocytosis, and related disorders.

Theoharides TC, Valent P, Akin C. N Engl J Med. 2015;373(2):163-172. 

Personalized management strategies in mast cell disorders: ECNM-AIM user's guide for daily clinical practice.

Valent P, Hartmann K, Schwaab J, et al. J Allergy Clin Immunol. 2022;10(8):1999-2012.e1996.

Systemic mastocytosis: multidisciplinary approach.

Zanotti R, Tanasi I, Crosera L, et al. Mediterr J Hematol Infect Dis. 2021;13(1):e2021068.

Linked Resources

Clinical Guidelines

The 2016 revision to the World Health Organization classification of myeloid neoplasms and acute leukemia.

Arber DA, Orazi A, Hasserjian R, et al. Blood. 2016;127(20):2391-2405.

The 5th edition of the World Health Organization classification of haematolymphoid tumours: myeloid and histiocytic/dendritic neoplasms.

Khoury JD, Solary E, Abla O, et al. Leukemia. 2022;36(7):1703-1719.

NCCN Clinical Practice Guidelines in Oncology: Systemic Mastocytosis.

National Comprehensive Cancer Network.

Total Rise in Peripheral Tryptase After Systemic Event (TRIPTASE) Calculator.

Patient Resources

The Mast Cell Disease Society, Inc. (TMS)

TMS is dedicated to providing multifaceted support to patients, families, and medical professionals in the community and to leading the advancement of knowledge and research in mast cell diseases through education, advocacy, and collaboration. 

The European Competence Network on Mastocytosis (ECNM)

The goal of the ECNM is to improve disease-recognition, diagnosis, and therapy in patients with mastocytosis in Europe.

Genetic and Rare Diseases Information Center

GARD helps patients find information, services, experts, financial aid, and support groups.

National Organization for Rare Disorders (NORD)

NORD is a patient advocacy organization committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. 

NCCN Guidelines for Patients: Systemic Mastocytosis

National Comprehensive Cancer Network.

Related activities
Webcast 
1.50 CME/CE

Can You Compete?

Best Practices for Nonadvanced Systemic Mastocytosis

Faculty: John M. Fahrenholz, MD; Matthew P. Giannetti, MD ; Tracy I. George, MD; Thanai Pongdee, MD
Release: 02/27/2024
Expiration: 03/27/2024