Mastocytosis Society Canada

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//resourc/nalcrom-update-march-2021 Suite a nos discussions avec Sanofi Canada concernant le medicament Nalcrom, nous avons publie une mise a jour sur notre site web. Nous comprenons que ces informations apporteront un lot de deception pour plusieurs patients, mais nous souhaitions partager ces informations le plus rapidement possible pour que vous puissiez prendre des decisions en regard de ces informations. Nous allons egalement partager toute information supplementaire lorsqu’elle sera disponible. Pour tous les détails: https://mastocytosis.ca//res/nalcrom-mise-a-jour-mars-2021

Mast cell activation syndrome (MCAS), is an immunological condition in which mast cells mistakenly release too many chemical mediators, resulting in several chronic symptoms involving the skin, gastrointestinal tract, heart, respiratory, and neurologic systems. Mast cells are present throughout most of our bodies and secrete different chemicals during allergic reactions. Symptoms include episodes of abdominal pain, cramping, diarrhea, flushing, itching, wheezing, coughing, lightheadedness and potential problems with "brain fog" or other difficulties with memory. The cause of MCAS is unknown. Treatment includes several combinations of medications like anti-histamines and mast cell stabilizers. #RareDiseaseDay

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