Rare Diseases Day 2016
An update from the HDA
As it is rare disease day and Huntington’s disease is a rare disease I thought it was a good opportunity to update you on some of the things happening in the HDA. Our awareness week will run from 9th May this year. Our theme, following requests from families, will be Juvenile Huntington’s Disease (JHD). During the week our Specialist Advisory Service (SHDA) will be organising a variety of events, as well as providing free training to services supporting families affected by this rare, but devastating form of the illness. In addition to this our fundraising team will be encouraging people to take part in the “Cake that” project, this is a lovely way to be able to raise awareness in HD and a good excuse to eat cake! We are also asking landmark buildings to light up in logo colours, lots have been approached and we currently have three willing to take part, those being based in Liverpool, Blackpool and Portsmouth.
HDYO, an organisation set up by young people for young people are running a European summer camp in England which the HDA is supporting. If you would be interested in attending this please contact [email protected]
You may be aware that twice a year we run a three day residential course for professionals working in the field of HD. This is always very popular and over subscribed, we are hoping to deliver a bespoke course in Dublin towards the end of the year.
The HDA has registered as a stake holder for the consultation from NICE into neurological problems. In addition to this we are attending an event in Westminster which is aimed at engaging politicians in the essential work that charities do in health, care and well being, and of course to raise awareness of HD.
We have been doing some work with Hospice UK and have recently had an article published through them and are hoping to publish another one with them during awareness week.
Cath Stanley
Chief Executive
An update from the HDA
As it is rare disease day and Huntington’s disease is a rare disease I thought it was a good opportunity to update you on some of the things happening in the HDA. Our awareness week will run from 9th May this year. Our theme, following requests from families, will be Juvenile Huntington’s Disease (JHD). During the week our Specialist Advisory Service (SHDA) will be organising a variety of events, as well as providing free training to services supporting families affected by this rare, but devastating form of the illness. In addition to this our fundraising team will be encouraging people to take part in the “Cake that” project, this is a lovely way to be able to raise awareness in HD and a good excuse to eat cake! We are also asking landmark buildings to light up in logo colours, lots have been approached and we currently have three willing to take part, those being based in Liverpool, Blackpool and Portsmouth.
HDYO, an organisation set up by young people for young people are running a European summer camp in England which the HDA is supporting. If you would be interested in attending this please contact [email protected]
You may be aware that twice a year we run a three day residential course for professionals working in the field of HD. This is always very popular and over subscribed, we are hoping to deliver a bespoke course in Dublin towards the end of the year.
The HDA has registered as a stake holder for the consultation from NICE into neurological problems. In addition to this we are attending an event in Westminster which is aimed at engaging politicians in the essential work that charities do in health, care and well being, and of course to raise awareness of HD.
We have been doing some work with Hospice UK and have recently had an article published through them and are hoping to publish another one with them during awareness week.
Cath Stanley
Chief Executive