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Advocacy & Resources

Debra Ireland
DEBRA Ireland is a national Irish charity, established to provide support services to patients and families living with the debilitating skin condition epidermolysis bullosa (EB). DEBRA Ireland also drives research into treatments and cures for those living with the condition. DEBRA Ireland was established in 1988 by the patients and families of those living with EB.
https://debraireland.org/

Debra international
DEBRA International is a worldwide network of national groups working on behalf of those affected by the genetic skin blistering condition epidermolysis bullosa (EB).
http://www.debra-international.org/

Pituitary Network Association
The Pituitary Network Association (PNA) is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them. PNA was founded in 1992 by a group of acromegalic patients in order to communicate and share their experiences and concerns. PNA has rapidly grown to become the world's largest and fastest growing patient advocacy organization devoted to the treatment and cure of pituitary disorders.
http://pituitary.org/

Nord
The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and service.
http://rarediseases.org/


EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 705 rare disease patient organisations in 63 countries.
http://www.eurordis.org/

Orphanet
Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.
http://www.orpha.net/

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