Patient Organizations


BCCNS – Basal Cell Carcinoma Nevus Syndrome Syndrome Life Support Network

The mission and combined vision are to create and provide educational materials and experiences  for children and adults manifesting the inherited, medical conditions and disorders experienced by those living with BCCNS; and to undertake a collaborative approach to the diagnosis, treatment, research, prevention, and cure of the disorders encompassed by BCCNS.

Visit the BCCNS’s site

BCC – Basal Cell Carcinoma Foundation

To further the charitable, educational, and scientific purpose of increasing public awareness regarding the gravity and incidence of Basal Cell Carcinoma, including all subtypes (afflicting over 5,000,000 USA residents each year – total incidence surpasses that of all other cancers combined).  To promote the research, discovery, knowledge, support, treatment, and, ultimately, cures for those individuals afflicted with, and suffering from, Basal Cell Carcinoma.


NFED – National Foundation for Ectodermal Dysplasias

The NFED aim to empower and connect people touched by ectodermal dysplasias through education, support, and research.

Visit the NFED’s site


NOAH – National Organization for Albinism and Hypopigmentation

NOAH’s mission is to act as a conduit for accurate and authoritative information about all aspects of living with albinism and to provide a place where people with albinism and their families, in the United States and Canada, can find acceptance, support and fellowship.

Visit NOAH’s site


DEBRA – Dystrophic Epidermolysis Bullosa Research Association

DEBRA is the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB).

Visit DEBRA’s website


XP Family Support Group – Xeroderma Pigmentosum

The Xeroderma Pigmentosum (XP) Family Support Group exists to improve the quality of life persons of those persons with XP and other diagnosed UV light condition.

Visit the XP Family Support Group’s site


FIRST – Foundation for Itchyosis & Related Skin Types

FIRST’s mission is to educate, inspire and connect those touched by Ichthyosis and related disorders through emotional support, information, advocacy and research funding for better treatments and eventual cures.

Visit FIRST’s site


IPPF – International Pemphigus and Pemphigoid Foundation

IPPF  goal is to improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.

Visit the IPPF’s site


CSD – The Coalition of Skin Diseases

The Coalition of Skin Diseases (CSD) advocates on behalf of individuals with skin diseases. The CSD supports basic scientific and clinical research, fosters physician and patient education, generates awareness of skin diseases, and unifies member organizations through the sharing of mutual concerns.

Visit the CSD’s website


NAAF – The National Alopecia Areata Foundation

The National Alopecia Areata Foundation (NAAF) supports research to find a cure or acceptable treatment for alopecia areata.

It also supports those with the disease, and educates the public about alopecia areata.

Visit the NAAF’s website


NEA – The National Eczema Association

The National Eczema Association (NEA) improves the health and quality of life for individuals with eczema through research, support and education.

The National Eczema Association (NEA) is a non-profit organization founded in 1988 to improve the health and quality of life for individuals with eczema through research, support, and education.

Visit the NEA’s website


NPF – The National Psoriasis Foundation

The National Psoriasis Foundation (NPF) is the world’s largest non-profit organization serving people with psoriasis and psoriatic arthritis.

NPF provides information and services to help people take control of their condition, while supporting research to find a cure.

Visit the NPF’s website


HPS – Hermansky-Pudlak Syndrome

Non profit support group for people and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorders such as Chediak Higashi Syndrome.  The HPS Network was founded in 1992 and incorporated in 1995. Our mission is to gather and disseminate information, to promote awareness and research, and to provide support to our members.