On the 28th February 2015, Sweet’s Syndrome UK will be supporting the global event, Rare Disease Day. This is a day that aims to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. But how has Sweet’s Syndrome UK helped to spread awareness of the rare autoinflammatory condition Sweet’s syndrome? How has it helped those with this condition? What has been achieved so far?
About Sweet’s Syndrome UK.
In 2012, Michelle Holder set up the Cardiff-based patient advocacy group (PAG) Sweet’s Syndrome UK to help those with the rare autoinflammatory condition, Sweet’s syndrome (SS).
What are the aims of Sweet’s Syndrome UK?
The aims are to:
- Provide evidence-based patient information, and improve access to information.
- Provide advice and support to those both inside and outside of the UK.
- Spread awareness of Sweet’s syndrome, particularly amongst health professionals and organizations.
Read more about Sweet’s Syndrome UK @ About.
Does Michelle have Sweet’s syndrome?
Yes. Read about Michelle’s experience of Sweet’s syndrome @ About Michelle.
The Sweet’s Syndrome UK timeline: how it all began and what’s been achieved so far.
- April 2012: An idea! It all begins in Cardiff, South Wales, UK.
- May 2012: Michelle researches the first UK SS patient-information-leaflet which is published by the British Association of Dermatologists. The leaflet is also available via the Irish Skin Foundation website. This means that patients in the UK and Southern Ireland are now able to access easy-to-read information about their condition.
- June 2nd 2012: Michelle sets up and runs the first UK SS Facebook group, Sweet’s Syndrome UK. The group provides support, information and advice to those with SS, their friends and family, inside and outside of the UK.
- Dec 2012: Michelle writes the Nursing Management of Sweet’s Syndrome for the Nursing Times. It is the first UK SS nursing management article, and helps to educate and spread awareness of SS amongst nurses and nursing students. Sweet’s Syndrome UK also starts to branch-out using various forms of social media.
- April 2013: Michelle starts and act as administrator for the first UK SS forum, Sweet’s Syndrome UK HealthUnlocked. HealthUnlocked is a company and social network for health that supports patient advocacy organizations. The forum helps those both inside and outside of the UK, and is available in English, Spanish and Portuguese. This gives Sweet’s Syndrome UK an increased ability to reach those with SS, including non-English speakers.
- Oct 2014: Michelle sets up and runs the first UK SS blog site, Sweet’s Syndrome UK – Help for Sweet’s Syndrome. All information on the site is researched and posted by Michelle.
- Nov 2014: Michelle becomes a member of Skin Conditions Campaign Scotland and the SS patient representative for Scotland. This gives Sweet’s Syndrome UK a greater ability to spread awareness of SS in Scotland and across the UK.
- Feb 28th 2015: Sweet’s Syndrome UK supports Rare Disease Day, and continues spreading awareness of SS.
What has happened since Rare Disease Day 2015?
- March 2015: Information on SS, and a link to the Sweet’s Syndrome UK blog site is added to the new Skin Care Cymru website, helping to spread awareness of SS, and making it easier for patients in Wales and across the UK to access information about their condition.
- April 2015: Information on SS is added to the British Skin Foundation website. This is a London-based charity whose main aim is researching and finding treatments and cures for skin conditions.
- May 2015: Sweet’s Syndrome UK gets its first official logo – our very own Sweet’s bee! Our colours are yellow and orange.
- June 2015: June 2nd is the first Sweet’s Syndrome UK Day and third anniversary of Sweet’s Syndrome UK. A link to our blog site is also added to the updated British Association of Dermatologists SS patient-information-leaflet, and we become a patient organization member of Rare Disease UK (RDUK). This is a London-based national alliance for people with rare diseases and all who support them.
- July 2015: Sweet’s Syndrome UK goes international! A link to our blog site is added to the New Zealand Organization for Rare Disorders (NZORD) website, and Gayle Chalmers becomes our NZ-based Sweet’s Syndrome UK contact. This makes it easier for those in New Zealand to access information about their condition.
- August 2015: A link to the Sweet’s Syndrome UK blog is added to the DermNet NZ Sweet’s Syndrome page. DermNet NZ is a website owned by the DermNet New Zealand Trust, and presents authoritative facts about the skin for consumers and health professionals in New Zealand and throughout the world.
- Sept 2015: Sweet’s Syndrome UK is listed as a patient organization on the National Organization for Rare Disorders (NORD) website. NORD is a non-profit organization based in the United States that provides a unified voice for courageous individuals with rare diseases, and the parents and other caregivers seeking to help them.
- Sept/Oct 2015: Sweet’s Syndrome UK is listed as a patient association and resource on the Autoinflammatory Alliance disease comparison chart – part of their new database. The Autoinflammatory Alliance is a San Franciso-based non-profit organization that helps adults and children with autoinflammatory conditions both inside and outside the United States.
- Jan 2016: Onwards and upwards!