Rare Disease Day 2023. Doing well is possible. The example of Huntington's disease.
People with Huntington's share positive experiences of relation with specialists who have accompanied them correctly towards the diagnosis and who continue to take care of them even after.
The Rare Disease Day 2023 theme is the metaphorical 'journey' that a person with a rare disease takes before receiving the diagnosis. This 'journey', in European Countries, lasts about 4 years.
LIRH Foundation, as always, supports the official Eurordis campaign, implemented in Italy through Uniamo - the Italian Federation of Rare Diseases and contributes with its own specific message.
For this 2023, we have chosen to give voice to experiences of good practice in the diagnosis of Huntington's disease (HD) and in the assistance provided to those affected, to demonstrate that it is possible to do well, as well as it is due.
This does not mean that good practice in HD diagnosing is common: it does mean, however, that it is possible.
Multidisciplinary and continuous assistance, psychological support, sharing of therapeutic choices, collaboration between clinicians and patient organizations are concrete experiences around which the testimonies of people with HD and their caregivers develop, which we invite you to listen to.
People with Huntington's, a rare disease among many other rare diseases, but still without a cure, need to share not only their difficulties, but also the positive experiences of relation with the specialists who have accompanied them correctly towards the diagnosis and who continue to take care of them even after.
Four narrative voices, four experiences, four geographical origins, united by the meeting with those who have been able to make the journey towards diagnosis and its acceptance less difficult. We thank Giuseppe, Morena, Alessandro and Alessia for making their voices available to this campaign.
The videos will be published starting from the second half of February.
rare diseases, you can do well.