Scleroderma Research:
EUSHNet
The EUSHNet network exists to improve non-pharmacological care and rehabilitation and reduce inequity in different countries through an international network of health professionals working with patients with Scleroderma/Systemic Sclerosis (SSc).
The development of a SSc network for HPs in Europe. The EULAR-HP group has asked FESCA to partner with them in this development to increase what health professionals can do for those with SSc. The EUSHNET project is an international collaborative network of European Health Professionals in Systemic Sclerosis.
The EUSHNet network exists to improve non-pharmacological care and rehabilitation and reduce inequity in different countries through an international network of health professionals working with patients with Scleroderma/Systemic Sclerosis (SSc). The network is antended to complement the work of the patient organization FESCA and the existing EUSTAR medical network. The EUSHNet activities will focus on physical, psychosocial and educational therapies, along with the associated need and impact of the patients. The overall aims of EUSHNet are:
- To improve expertise of HPs through support for knowledge generation and education
- To facilitate communication between HPs to achieve clearly defined standards of non-pharmacological care and rehabilitation in SSc
- To establish evidence based standards of care and of rehabilitation in SSc
EUSHNet is backed by EULAR and the strength of the EUSHnet network lies in the coordinated activity of small numbers of HP- practitioners in large numbers of EU member states. Therefore, the EUSHNet Network consists of a steering committee and a network of national champions who will engage with and coordinate HP clinicians in their own countries in the conduct of the activities of EUSHNet. The national champions are the “heart” of the proposed programme of work. They will be in contact with other HPs from varying clinical backgrounds and receive, evaluate and cascade suggestions to HPs in their own geographical region or country.
World Scleroderma Day
Having a disease that nobody has heard of is a lonely business. When even the doctors cannot recognise it, or tell you what is going to happen, it is lonelier still. So World Scleroderma Day was created to tell people, including the medical community, what it means to have this disabling disease. June 29 is a day to recognise the bravery of those who live with scleroderma, and to demand equal treatment and equal care for people with scleroderma across Europe.
Every year, on June 29, we campaign for a world in which equal rights, treatments, and care are offered to people with scleroderma, and in which such rare diseases are not forgotten, but afforded the consideration and attention of other more common diseases.