Lost your Sense of Smell or Taste? These Organizations Can Help.
By Stephanie Feuer
Loss of smell or taste can be confusing, especially when the onset is sudden, as with COVID-19. With few therapeutic options to treat anosmia or parosmia, individuals must learn to endure and manage these conditions in their daily lives. Fortunately there are organizations that provide much needed information and support to individuals suffering from smell and/or taste loss. Below you’ll find brief descriptions, web, contact and social media information. Please pass this information along to patients and others to whom it would be useful.
Founded by Chrissi Kelly after she lost her sense of smell in 2012, and now a UK registered charity. Abscent supports people who are experiencing the distressing effects of smell loss. The organization offers several robust online support communities, evidence-based information, events, smell training sessions, smell training kits, and the Snif smell training app. Abscent is the home of NoseWell, the Covid-19 smell loss guide.
Contact support@abscent.org
ALTERED EATING RESEARCH NETWORK
Based in the UK at the University of Newcastle, the Altered Eating Research Network was formed in 2018. They address difficulties around food and eating in a comprehensive, trans-diagnostic approach; altered eating may be the result of disease, illness, life-course transitions and/or external contextual issues and may involve time-limited or chronic difficulties with food and eating. Notably, they offer resources for those struggling to eat with parosmia and other smell and taste distortions.
Contact: duika.burges-watson@ncl.ac.uk
Founded by Jean-Michel Maillard in 2015, this group supports those suffering from smell loss in France, Belgium, Spain, Switzerland and Quebec. They provide information and support, including forums on their website.
Contact: contact@anosmie.org
Based in the UK, Fifth Sense is a registered charity established in 2012 by Duncan Boak, who lost his sense of smell after a fall. The organization supports people affected by smell and taste disorders across the world. They provide comprehensive information on smell loss, host events, and advocate for research and understanding of smell loss. Taste, Train, Enjoy is their collaboration with FlavorActiV with the aim of enabling people who have suffered impairment of their sense of smell to get more pleasure from food and drink.
Contact: info@fifthsense.org.uk
The HungerNdThirst Foundation based in Amsterdam is dedicated to improving the quality of life of people with cancer. They develop practical tools to alleviate side effects such as taste disturbance, work to increase awareness, and facilitate personal support and advice through the Peer-to-Peer (Buddy) app. The HungerNdThirst Foundation developed the ATE (Awareness Through Experience) Cookie ® that mimics taste alterations during chemotherapy to facilitate conversations about taste disturbance.
Contact: info@hungerndthirst.org
THE MONELL CHEMICAL SENSES CENTER
The Monell Center is the world’s only independent, non-profit scientific institute dedicated to interdisciplinary basic research on the senses of taste and smell. On their website you’ll find both their latest research, and some of the most recent articles about smell and taste loss, as they are often quoted in the press. They host seminars and events on key topics in smell and taste, and publish regular newsletters.
Contact: https://monell.org/contact-us/
Based in the Netherlands, this association was founded in 2000. They provide information about smell and taste disorders, including health, nutrition, social safety and human relationships. They connect individuals suffering from smell loss via a private Facebook page for members. Their smell training app, Reuktraining.nl, was developed by reuksmaakstorder.nl and subsidized by the Dutch Ministry of Health, Welfare and Sport.
Contact: secretariaat@reuksmaakstror.nl
The Smell Podcast was created and launched by Katie Boateng in August 2018. She interviews scientists, clinicians and individuals about smell loss, treatments and new research.
Listen here https://www.thesmellpodcast.com/episodes
Contact: TheSmellPodcast@gmail.com
The Smell and Taste Association of North America is a new patient advocacy group formed in 2020 to improve the quality-of-life for people with smell and taste disorders. They recognize that the loss of taste or smell can affect health, safety and emotional well-being. STANA seeks to expand research, education and treatments for people living in North America who are experiencing the invisible loss of these senses.
Contact: https://thestana.org/contact-us
