Supporting Families

Improving the quality of life for families

Projects

Our team of nurses, psychologists and social workers support and advise families and health care providers through a number of different services.

Family planning and pregnancy

We offer guidance and advice on pre natal screening and help and support women with Butterfly Skin throughout their pregnancy and birth.

Born with Butterfly Skin

We provide healthcare support, mental health support and social support to families at this incredibly challenging time, whilst ensuring that all medical staff are advised on how to best care for newborn babies with Butterfly skin.

Education and schooling

We guarantee children with EB the support they need at school and promote the importance of inclusivity.

With you in hospital

We attend medical appointments with families and advise healthcare professionals on wound care and treatments. We offer guidance and advice to medical teams and carers to ensure the best level of treatment for our families.

Care at home

We campaign for our families to ensure that they have access to home visits from a district nurse for support with daily wound care treatment.

Wound care and symptom relief

We work hard so that people with Butterfly Skin have free access to the best possible level of care and the most up to date treatments across all areas in Spain.

Wellbeing

We provide a 24h helpline for families for information, advice and emergencies.

DEBRA at home

We make home visits to families to help them manage the day to day challenges.

National Families meetings

Through these annual events which include talks, workshops and activities, we bring families together to share their experiences and provide them with the most up to date information on wound care management and the latest research developments.

EBWB

EB Without Borders, is a project launched by DEBRA International. Our teams of nurses, psychologists and social workers, provide online advice and support to families in Hispanic speaking countries.

End of life care and bereavement counselling.

We look after people with Butterfly Skin during end of life care and support their families.

Defending their rights

The lack of awareness, which still surrounds this condition, affects social policies and the rights of families with Butterfly Skin.

Our aim is to ensure that the fundamental and most basic rights are met and supported by the health, social and education system. We provide advice to families and civil servants, meeting with the different arms of the regional governing bodies, to outline their needs so that we can ensure a better and fairer future for our families.

Can we help you?

Our specialist team of nurses, psychologists, social workers and researchers are here to help. If you are a family with Butterfly Skin and you need our help, please contact us now.

Contact us!

Supporting families

Supporting Families

Improving the quality of life for families

Projects

Family planning and pregnancy

Born with Butterfly Skin

Education and schooling

With you in hospital

Care at home

Wound care and symptom relief

Wellbeing

DEBRA at home

National Families meetings

EBWB

End of life care and bereavement counselling.

Defending their rights

The lack of awareness, which still surrounds this condition, affects social policies and the rights of families with Butterfly Skin.

Can we help you?

Contact us!

DEBRA

Nurses

Psychologists

Social workers

Research

Become a member!

If you are not yet a member of DEBRA, you can become a member and enjoy different advantages:

We need you

To continue to support people with Butterfly Skin and their families. Get involved