MCAS & Mastocytosis Advocates: Rare Voices Australia


Advocacy Organizations, Educational Organizations, Research Organizations, Support Organizations

Who are they? Rare Voices Australia (RVA) is Australia’s non-profit, national peak organisation advocating for all who live with rare disease. RVA provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare diseases. Patient-centred, RVA works with all stakeholders including patients, key peak bodies, governments, […]

Dysautonomia & Mast Cell Disorders Advocates: Dysautonomia Support Network


Advocacy Organizations, Support Organizations

Who are they? DSN is a U.S. based, 501 (C) (3) non-profit, organization providing support, resources, education and advocacy for patients affected by the many forms of Dysautonomia and related conditions such as Connective Tissue Disorders, Mast Cell Activation Disorders, Chiari Malformation and Gastric Motility Disorders. Founded in 2012 as Dysautonomia Divas, the organization now runs over 50 […]

Mastocytosis Advocates: MastCellConnect.org


Research Organizations

Who are they? Mast Cell Connect is a registry to collect information from people with mastocytosis on their experiences with the disease. By providing researchers with a database of detailed medical information about people with a specific disease, registries have proven to be a valuable tool in better understanding rare diseases like mastocytosis. You can […]

Mastocytosis & MCAS Advocates: RareDiseaseDay.org


Advocacy Organizations, Educational Organizations, Support Organizations

Who are they? The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in […]

Mastocystosis & MCAS Advocates: RareConnect.org


Advocacy Organizations, Support Organizations

  Who are they? A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with […]

Mastocytosis Advocates: The European Competence Network


Advocacy Organizations, Educational Organizations, Support Organizations

Who are they? The general aim of the ECNM is to improve disease-recognition, diagnosis, and therapy in patients with mastocytosis in Europe. To reach these general goals, a number of specific aims have to be envisaged. Important specific aims are to provide all relevant available information about mastocytosis to patients and doctors, to establish standards for […]

Dysautonomia Advocates: PoTS UK


Advocacy Organizations, Educational Organizations

Who are they? PoTS UK was founded by a group of individuals with PoTS who had a desire to increase awareness of this condition. We now benefit from the support and guidance of a number of doctors and specialist nurses with an interest in this field. You can visit their main website by clicking here. […]

Mastocytosis Advocates: NORD (National Organization for Rare Disorders)


Advocacy Organizations, Educational Organizations, Research Organizations

Who are they? NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. You […]

Pediatric Mastocytosis Advocates: MastoKids.org


Advocacy Organizations, Educational Organizations

Who are they? Masto Kids is a non-profit charitable organization, founded in 2002, by families who have children diagnosed with mastocytosis, and other interested people. Run by volunteers, Masto Kids is dedicated to raising awareness of pediatric mastocytosis and to encouraging research of this disease. There is little understanding of pediatric mastocytosis and very little […]

Mast Cell Disease Research: ClinicalTrials.gov


Research Organizations

Who are they? ClinicalTrials.gov is a Web-based resource that provides patients, their family members, health care professionals, researchers, and the public with easy access to information on publicly and privately supported clinical studies on a wide range of diseases and conditions. The Web site is maintained by the National Library of Medicine (NLM) at the […]

Welcome to MastCellDisease.org


MastCellDisease.org

Who are we? MastCellDisease.org is a companion site to MastCellDisease.com and is an online advocacy website connecting patients (with all forms of mast cell disease) and their caregivers to advocacy, research and educational resources available across the globe. For more information please contact Michelle Dellene at michelledellene@mastcelldisease.com Subscribe to Blog via Email Enter your email […]