Meeting the needs of patients

Patients and Families Difficulties

Patients and families have to face health care and social challenges such as

• late diagnosis (many cases are still undiagnosed or misdiagnosed)
• difficulty to mobilize the necessary skills and expertise,
• lack of awareness of the existence of centers specialized in the treatment of these diseases,
• obstacles to the identification of community medical and paramedical resources,
• insufficient coordination between physicians and hospitals,
• insufficiently trained caregivers,
• limited access to information affecting authorities, MDs, patients and their families, etc.
• no effective cure but only possible prevention strategies and treatment helping to manage symptoms
• difficult access to medicines and medical devices
• social life is very hard for the patients and their families: access to school, to work, and to leisure activities is almost impossible

Numerous intiatives

Numerous initiatives have been undertaken to improve the quality of health care and social support for patients suffering from severe skin diseases in the Member States and in South Mediterranean and Middle-Eastern countries where genodermatoses are more prevalent.
While waiting for the outcome of genetic research, these different initiatives underline the importance of:

• multidisciplinary health care
• syptomatic treatment
• exchange of expertise and ressources
• involving public health authorities

Importance of multidisciplinary health care

The health care involves many specialties (dermatology, otolaryngology, pediatrics, gynecology, urology, ophthalmology, oncology, plastic and maxillofacial surgery, gastroenterology, nephrology, radiology, radiotherapy, odontology, nutrition, etc.) and the access to medicines and medical devices is expensive.

Importance of symptomatic treatment

Only symptomatic treatments are available and they are of major importance to improve the quality of the life of the patients.

Share expertise and resources

Developing European collaborations and sharing of expertise and resources for the delivery of health care in the field of genodermatoses will allow to:

• overcome the limited experience of professionals,
• improve the access to treatment requiring a particular concentration of resources and expertise,
• provide training for health professionals,
• spread best practice and help small countries.