Meet Yoni Masel- RareDisease Patient, Advocate, Activist & Blogger
His goal: To raise awareness for rare diseases, and to help others by educating and sharing #PatientWorthy information.
Yoni Maisel (Yonatan Maisel) is no stranger to rare diseases because he has not one, but two of them – common variety immunodeficiency disease (CVID) and the even rarer Sweet’s Syndrome. He is one of two documented cases of having two conditions simultaneously.
Maisel is intensely curious and has read hundreds of articles on genetic counseling regarding rare diseases and cites Exploring the Genetic Counselor’s Role in Facilitating Meaning-Making: Rare Disease Diagnoses as one of the most insightful. The article by Benjamin M. Helm discusses the emotional and psychological challenges people with rare diseases face. This is the type of information Maisel brings to his blog, and disseminates through his Twitter account which has more than 6,000 followers.
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Yoni is often asked to guest blog on health activist sites- (such as but not limited to wegohealth blog, Genome Alberta and Global Genes). He is an advocate for gaining access to medical journals so that people with rare diseases can conduct their own research. Many of the journals are extremely expensive to obtain, and Maisel is pushing for the information to be made available online.
Maisel’s blog contains links to resources that patients will find invaluable, and a series of videos that are informative, but also moving. He has created videos of his own which can be found on YouTube and his YouTube Channel. (See below info).
To learn more, checkout Yoni’s pages and follow him on Twitter @Primary_Immune1
YouTube Channel: Primary Immune Deficiency: tips, Advice, Issues & Immunological News