Mastocytosis Society Canada

Mastocytosis Society Canada MSC was created to assist patients, caregivers and health care professionals learn more about mast cell diseases and to lean on each other for support.

MSC supports patients, caregivers and healthcare professionals by:

* raising awareness of mast cell disease, resulting in an improved quality of life for patients.
* providing a basic understanding of mast cell disease including types, forms and variants.
* creating an understanding of symptoms and symptom management including nutrition awareness and trigger elimination.
* providing other

MSC supports patients, caregivers and healthcare professionals by:

* raising awareness of mast cell disease, resulting in an improved quality of life for patients.
* providing a basic understanding of mast cell disease including types, forms and variants.
* creating an understanding of symptoms and symptom management including nutrition awareness and trigger elimination.
* providing other

Operating as usual

A few months ago, Kathy asked the city of Edmonton to recognize Mastocytosis and Mast Cell disease awareness day... The ...
11/02/2021

A few months ago, Kathy asked the city of Edmonton to recognize Mastocytosis and Mast Cell disease awareness day... The high level bridge in Edmonton is simply beautiful with purple lights 😍

It’s a great initiative. Thank you Kathy for sharing these photos with us!

#awarenessday #MSC #Mastocytosis #mastcelldisease

10/20/2021
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10/19/2021
We invite you to share in the Mast Cell Disorder and Quality of Life study of the Griffith University in Australia.A psy...
10/07/2021
www151.griffith.edu.au

We invite you to share in the Mast Cell Disorder and Quality of Life study of the Griffith University in Australia.

A psychology PhD research team at Griffith University in Australia is conducting a worldwide study looking at factors linked to psychological distress and quality of life in adults with Mast Cell Disorder (MCD).

They are hoping to reach as many as possible with this rare condition, to help raise awareness, and to plan and pilot a first-ever intervention to improve wellbeing and quality of life for people with MCD.

Ten $50 Amazon vouchers will be drawn as participation prizes, and a results summary will be made available.

So please take the time to participate in this ground-breaking research. This part of the study closes on 30 October 2021.

Depression, anxiety, stress, and poor quality of life are associated with Mast Cell Disorder. What is your experience? Please share in the Mast Cell Disorder and Quality of Life study by clicking on the following link :

https://www151.griffith.edu.au/redcap/surveys/index.php?s=FKMPHEJCJE

Mast Cell Disorder is an increasingly widespread group of incurable chronic diseases characterised by a range of unpredictable and spontaneous symptoms, a high treatment burden, and long diagnosis lead-times. The purpose of this survey is to explore the factors associated with the well-being and qua...

MSC Nalcrom Medication Follow-Up and UpdateWe continue to be in discussions with Sanofi Canada and Health Canada regardi...
10/05/2021
mastocytosis.ca

MSC Nalcrom Medication Follow-Up and Update

We continue to be in discussions with Sanofi Canada and Health Canada regarding patient’s concerns of quality issues with Nalcrom.

Quality concerns and access to the drug Nalcrom remain of high importance to the MSC. If you have any additional questions please reach out to Beth Lymer ([email protected]) or Caitlin Salvino ([email protected])

To access our report update, please click on the following link:https://mastocytosis.ca/images/Documents/Nalcrom_Update_July_2021_1.pdf

A special thank you to Carrie ❤️In August 2021, we learned that one of our board members, Carrie Ivens, would be steppin...
10/04/2021

A special thank you to Carrie ❤️

In August 2021, we learned that one of our board members, Carrie Ivens, would be stepping away from MSC due to personal reasons.

Although we are sad to have her no longer involved with MSC, we are very grateful for all she contributed to MSC.

We are so appreciative of her expertise and guidance while volunteering on our board of directors.

Un merci tout spécial à Carrie! ❤️

En août 2021, nous avons appris que l'une des membres du conseil d'administation, Carrie Ivens, devait quitter ses fonctions au sein de la SCM dû à des raisons personnelles.

Bien que nous soyons tristes de cette situation, il est important pour nous de saluer son travail et tout ce qu'elle a apporté à la SCM.

Carrie, nous te sommes reconnaissants pour tout le temps que tu as investi auprès de l'organisation. Ton expertise et tes conseils ont fait une réelle différence.

MSC Submission on Compounded Medication and National Pharmacare | As an extension of the Mastocytosis Society of Canada’...
09/30/2021
mastocytosis.ca

MSC Submission on Compounded Medication and National Pharmacare | As an extension of the Mastocytosis Society of Canada’s (MSC) involvement in the consultations on the National Strategy for High-Cost Drugs for Rare Diseases, MSC participated in additional discussions with Health Canada on the unique needs of mast cell disease patients.

We prepared a briefing document and participated in a meeting with Health Canada on the need to include compounded medication in the national pharmacare strategy.

For a copy of the MSC briefing document on the need to include compounded medications in the national pharmacare strategy, please click on the following link:https://mastocytosis.ca/images/Documents/MSC_Briefing_document.pdf

Consultation on Building a National Strategy for High-Cost Drugs for Rare Diseases | In January 2021, Health Canada laun...
09/27/2021
Building a National Strategy for Drugs for Rare Diseases: What We Heard from Canadians - Canada.ca

Consultation on Building a National Strategy for High-Cost Drugs for Rare Diseases | In January 2021, Health Canada launched a national online engagement to reach out to rare disease patients, their families and other stakeholders and receive their feedback on a national strategy for high cost drugs for rare diseases. This engagement period occurred between January 27 to March 26, 2021.

Mastocytosis Society of Canada participated in these consultations and provided written and verbal feedback on the proposed national strategy. On July 26, 2021, the federal government released a report on the consultation titled: Building a National Strategy for Drugs for Rare Diseases: What We Heard from Canadians.

For a summary of the consultations and the outcomes, please read the report by clincking on the following link: https://www.canada.ca/en/health-canada/programs/consultation-national-strategy-high-cost-drugs-rare-diseases-online-engagement/what-we-heard.html

This report summarizes responses to the national public and stakeholder engagement, which lasted from January 27 to March 26, 2021.

UPDATE | In February and March 2021, MSC conducted a survey on access to the medication Nalcrom. This survey was in part...
06/16/2021
www.mastocytosis.ca

UPDATE | In February and March 2021, MSC conducted a survey on access to the medication Nalcrom. This survey was in part in response to concerns raised by patients over appearance changes and efficacy changes in recent batches of Nalcrom.

Following the completion of the survey, we have created a report that summarises the data collected and our efforts to advocate on behalf of our patient population.

To access the report, please use the link below. Please note that we have shared the report with Sanofi Canada and Health Canada.

https://www.mastocytosis.ca/images/Documents/MSC_Nalcrom_Survey_Report.pdf

Our most recent update on the Nalcrom shortage is now available on our website. Please check the link below for more inf...
05/03/2021
Nalcrom Updates

Our most recent update on the Nalcrom shortage is now available on our website. Please check the link below for more information.

We are writing to provide an update regarding the medication called Nalcrom and our recent discussions with Sanofi Canada. On March 4, 2021, we shared an update with our patient population regarding the declared shortage of Nalcrom by Sanofi Canada. This shortage declaration by Sanofi Canada was mad...

**Please note that this is a survey being circulated by a researcher at the Institut de recherches cliniques de Montréal...
04/23/2021
Collecte de témoignages sur des situations moralement problématiques vécues par des adultes québécois atteints de maladies rares

**Please note that this is a survey being circulated by a researcher at the Institut de recherches cliniques de Montréal (IRCM). The survey is seeking feedback from residents of Quebec who live with a rare disease. It is only available in French.**

Invitation pour les résidents du Québec!

Une candidate au doctorat de l’Institut de recherches cliniques de Montréal (IRCM) travaille présentement sur un projet portant sur l’éthique et les maladies rares au Québec.

En appui à cette démarche, nous invitons les résidents du Québec qui vivent avec une maladie des mastocytes à partager leur témoignage et les difficultés qu’ils ont vécues au quotidien ou dans le milieu de la santé en lien avec leur maladie rare.

Pour contribuer à ce projet et aider à faire avancer le progrès, nous vous invitons à compléter ce sondage d'une durée d’environ 30 minutes: https://rare.urlweb.pro/s/index.php?a=JTk2ciU5NGklOUIlQUE=&id=JTk4aSU5M24lOTclQUI=

Merci de bien vouloir remplir ce questionnaire.

We have written an update on our website regarding the medication called Nalcrom and our recent discussions with Sanofi ...
03/06/2021
Nalcrom Update - March 2021

We have written an update on our website regarding the medication called Nalcrom and our recent discussions with Sanofi Canada.

We realize that this update will come as a disappointment to many of those in our patient population, however we wanted to share this new information as soon as possible to allow you to make decisions based on all current information.

MSC will seek to provide additional updates as they become available.

https://mastocytosis.ca/en/resources/nalcrom-update-march-2021

Suite à nos discussions avec Sanofi Canada concernant le médicament Nalcrom, nous avons publié une mise à jour sur notre site web.

Nous comprenons que ces informations apporteront un lot de déception pour plusieurs patients, mais nous souhaitions partager ces informations le plus rapidement possible pour que vous puissiez prendre des décisions en regard de ces informations.

Nous allons également partager toute information supplémentaire lorsqu’elle sera disponible.

Pour tous les détails: https://mastocytosis.ca/en/resources/nalcrom-mise-a-jour-mars-2021

We are writing to provide an update regarding the medication called Nalcrom and our recent discussions with Sanofi Canada. In December 2020, we were informed by members of our patient community of concerns with the quality and efficacy of the Nalcrom medication from the most recent batches. Concerns...

The Mastocytosis Society of Canada has put together a survey on access to the medication Nalcrom for patients in Canada....
02/14/2021
MSC Access to Nalcrom 2021 Survey

The Mastocytosis Society of Canada has put together a survey on access to the medication Nalcrom for patients in Canada.

This survey seeks to gather more information on recent reported capsule issues, as well as how important Nalcrom is for treatment and its availability to Canadians via supply chain issues.

This information will be used as evidence as they engage further in discussions with Sanofi Canada and government officials to follow-up on the current Nalcrom capsule concerns and the need to reduce shortages to guarantee a more stable supply of Nalcrom for individuals living with MCAD.

This survey is collecting information on both the shortage and quality of the capsules experiences that patients have experienced in Canada. Please complete this survey if you have experienced either of these issues, as we are following up on both with a range of stakeholders.

If you have time to fill out the survey that would be much appreciated. If you have any concerns or would like to be in touch with the Mastocytosis Society of Canada you can email Caitlin ([email protected]).

Link to the French version : https://forms.gle/n73Bqdpjc8596Use9

Mastocytosis Society Canada (MSC) is a national organisation for individuals living with mastocytosis and other mast cell diseases (including MCAS, HATS & idiopathic anaphylaxis) in Canada. Our organisation has received reports from some of our membership that they are experiencing difficulty in acc...

Interested in a charm? These beautiful charms are a great conversation starter and provide a unique opportunity to raise...
10/17/2020
Purchase an Awareness Charm

Interested in a charm?

These beautiful charms are a great conversation starter and provide a unique opportunity to raise awareness about mast cell disease. Purchase a charm, keychain or bracelet for anyone who might be impacted by mast cell disease.

https://mastocytosis.ca/en/get-involved/purchase-an-awareness-charm

These beautiful charms are a great conversation starter and provide a unique opportunity to raise awareness about mast cell disease.  Purchase a charm, keychain or bracelet for anyone who might be impacted by mast cell disease.  They're sure to wear it proudly!

What is MCAS?Mast Cell Activation Syndrome (MCAS) is a rare immunologic disorder that is experienced differently by each...
10/06/2020
Mast Cell Activation Syndrome

What is MCAS?

Mast Cell Activation Syndrome (MCAS) is a rare immunologic disorder that is experienced differently by each person living with it. Mast cells are best understood as the “allergy cell” of the body and upon being triggered it releases numerous chemicals, including histamine, leukotrienes, etc.

For individuals living with MCAS, their mast cells are overactive and release these chemicals in the body, causing a range of symptoms across organ systems. This can result in individuals living with MCAS having a multitude of chronic and episodic symptoms that are caused by a range of triggers that cause reactions. It can impact their cognitive, skin, airway, gastrointestinal and cardiac systems with a variety of symptoms.

Although incurable, individuals living with MCAS can manage it through a combination of medications and diet/lifestyle changes. The experience and treatment of MCAS is an individualised process that is developed by each individual in partnership with healthcare practitioners

https://mastocytosis.ca/en/mast-cell-disease/mcas

Initially, around the beginning of 1990 and until recently, Mast Cell Activation Syndrome (MCAS) was the medical terminology for a new expression of mast cell disease.  It has never been an official diagnosis such as Cutaneous Mastocytosis or Systemic Mastocytosis1.  This syndrome was proposed whe...

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About Us

Mastocytosis Society Canada (MSC) is a registered Canadian charity.

MSC was created to assist patients, caregivers and health care professionals learn more about mast cell disorders and to lean on each other for support. The audience we support is quite diverse and includes:


  • newly diagnosed patients,

  • patients in search of a diagnosis,
  • Nearby health & beauty businesses

    Comments

    Due to overwhelming interest, the MCD & QoL survey will stay open for a little while longer. You do not need a diagnosis for this survey .... please share your thoughts on your wellbeing, levels of distress and quality of life as someone with a Mast Cell Disorder here --> https://is.gd/MCDandQoL
    sometimes I itch in random places all over my body and my cheek and neck feel as if the tissue beneath the skin is swollen. I also experience this after taking a new medication. Does any of this sound familiar? Thank you.
    🟣 III Jornadas Médicas online sobre Patologías Mastocitarias, los días 19 y 20 de noviembre de 2021, dirigidas a los profesionales sanitarios. Más información 👉🏼 https://3jmpm.org #EnfermedadesPocoFrecuentes #Mastocitosis #PatologíasMastocitarias
    In the Winnipeg Free Press today, journalist Randall King talks with Systemic Mastocytosis patient, Fiona Smith (me) about her collaborative show opening tonight (virtually) and what virtual inclusion has meant for individuals like her: https://www.winnipegfreepress.com/arts-and-life/entertainment/arts/disruption-of-disability-sparks-theatrical-creativity-574410392.html?fbclid=IwAR09fNHznALK6Ntu37TzKYkLSQn5jO7g0aflexnf1k0wTAsFLfLdES3O2Ow
    ℹ Article published ➡️ The Journal of Allergy and Clinical Immunology: «COVID-19 vaccination in mastocytosis: recommendations of the European Competence Network on Mastocytosis (ECNM) and American Initiative in Mast Cell Diseases (AIM)».
    ℹ Internacional of Journal Molecular Sciences: «Molecular background, clinical features and management of pediatric #Mastocytosis: status 2021».
    ℹ Mastocytosis National Expert Centre (CEREMAST): «Neuropsychiatric, cognitive and sexual impairment in mastocytosis patients». Published: Orphanet Journal of Rare Diseases.
    ℹ️ «COVID-19 infection in patients with mast cell disorders including mastocytosis does not impact mast cell activation symptoms». Journal of Allergy and Clinical Immunology
    ℹ️ Published article: «Mediator-Related Symptoms and Anaphylaxis in Children with Mastocytosis».
    ℹ Article published by The Hematology: «Proposed global prognostic score for systemic mastocytosis: a retrospective prognostic modelling study».
    ⚠️ Protocolo de vacunació frente a SARS-COV-2 en pacientes con Mastocitosis, Síndromes de Activación Mastocitaria y Alfa-Triptasemia Hereditaria propuesto por la RED ESPAÑOLA DE MASTOCITOSIS. #REMA
    ℹ️ Artículo publicado por American Society of Hematology en el que participa Peter Valent, coordinador de la ECNM: «La α triptasemia hereditaria es un biomarcador genético válido para los síntomas graves relacionados con mediadores en la mastocitosis».