MEMBERSHIP ORGANIZATIONS

ASSOCIATE MEMBERS

Cicatrical Alopecia Research Foundation (CARF)
www.carfintl.org

About Cicatricial Alopecia:
The term “cicatricial alopecia” refers to a diverse group of rare disorders that destroy the hair follicle, replace it with scar tissue, and cause permanent hair loss.

Cutaneous Lymphoma Foundation
www.clfoundation.org

What is Cutaneous Lymphoma?
Cutaneous lymphomas are types of non-Hodgkin’s lymphomas (NHL) that originate in the lymphocytes (white blood cells). Unlike most other types of NHL, which develop in lymph nodes, cutaneous lymphomas develop primarily in the skin. They can be classified into cutaneous B-cell lymphomas and cutaneous T-cell lymphomas, depending on which type of lymphocyte they originate from.

Foundation for Ichthyosis & Related Skin Types (FIRST)
www.firstskinfoundation.org

What is ichthyosis?
Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. The prefix “ichthy” is taken from the Greek root for the word fish.

Global Parents For Eczema Research
www.parentsforeczemaresearch.com

OUR MISSION

To dramatically improve quality of life for children living with eczema by advancing research that fills critical knowledge gaps from the patient and family perspective.

Global Parents for Eczema Research (GPER) is an international coalition of parents of children with eczema comprised of and led by parents. GPER formed in 2015 to address the critical need for research that answers questions of importance to children and families, and was selected by the Patient-Centered Outcomes Research Institute (PCORI) for a three-year award to pursue that purpose.

Gorlin Syndrom Alliance
www.gorlinsyndrome.org

About Gorlin Syndrome or Basal Cell Carcinoma Nevus Syndrome:
Gorlin Syndrome (GS) aka Basal Cell Carcinoma Nevus Syndrome is a rare disorder that can affect multiple organ systems in the human body. This syndrome is caused by a genetic mutation of the tumor suppressor gene (PTCH) found in the hedgehog signaling pathway. The mutation is either inherited or the result of a spontaneous mutation at conception. Approximately 75% of affected persons today have a parent or relative with BCCNS.

Global Vitiligo Foundation
globalvitiligofoundation.org

Vitiligo is an autoimmune skin disease causing loss of pigment from areas of the skin, resulting in irregular white spots or patches.

International Hyperhydrosis Society
www.sweathelp.org

Hyperhidrosis is an idiopathic disorder of extreme, uncontrollable, episodic, and/or unexpected sweating beyond what’s “normal” or necessary to regulate temperature or as a reaction to  stress.

International Pemphigus & Pemphigoid Foundation
www.pemphigus.org

Pemphigus & Pemphigoid
Pemphigus and Pemphigoid (P/P) are defined as a group of life-threatening autoimmune blistering disorders characterized by acantholysis resulting in the formation of intraepithelial and subepithelial blisters in mucous membranes and skin. Acantholysis is the loss of keratinocyte to keratinocyte adhesion, or the skin cells no longer being held together. Patients with P/P develop mucosal erosions and/or flaccid bullae, erosions, or pustules on the skin.

International Topical Steroid Awareness Network
www.itsan.org

About Topical Steroid Withdrawal Syndrome:
Topical Steroid Withdrawal Syndrome (TSW Syndrome), also known as Topical Steroid Addiction (TSA) or Red Skin Syndrome (RSS), is a debilitating condition that can arise from the use of topical steroids to treat a skin condition. TSW Syndrome can also arise from topical steroid use in individuals with no prior skin condition, such as with cosmetic use or applying to someone else.

National Alopecia Areata Foundation (NAAF)
www.naaf.org

What is alopecia areata? Whom does this disease affect?

Alopecia areata is an autoimmune skin disease resulting in the loss of hair on the scalp and elsewhere on the body. Alopecia areata patchy usually starts with one or more small, round, smooth bald patches on the scalp or elsewhere. Total scalp hair loss is alopecia areata totalis. Complete body hair loss is alopecia areata universalis. Alopecia totalis and alopecia universalis are considered rare diseases.

National Foundation for Ectodermal Dyplasias (NFED)
www.nfed.org

What are Ectodermal Dysplasias?
Ectodermal dysplasias are a diverse group of genetic disorders that involve defects of the hair, nails, teeth, glands and skin. Other parts of the body may be affected also. The combination of physical features a person has and the way(s) in which it is inherited determines if it is an ectodermal dysplasia.

More than 180 different types of ectodermal dysplasias exist. Yet, most types share some common features, with symptoms ranging from mild to severe. The early diagnosis of a specific type will help identify which combination of symptoms the person has or will have.

National Eczema Association
www.nationaleczema.org

Types of eczema
Eczema is an umbrella term used to describe a group of medical conditions that cause the skin to become red, itchy and inflamed and sometimes blister, weep or peel. People with one type of eczema may also develop other types depending on genetics, and exposure to environmental and other triggers. There are seven common types of eczema: atopic dermatitis, contact dermatitis, dyshidrotic eczema, neurodermatitis, nummular eczema, seborrheic dermatitis and stasis dermatitis.

Nevus Outreach
www.nevus.org

A congenital melanocytic nevus, also referred to as “CMN,” is a birthmark that is caused by the excessive accumulation of benign pigment producing cells called melanocytes. It usually has varying shades of brown color, and the size can range from the size of a freckle to encompassing large areas of the body.

Pachyonychia Congenita Project (PC Project)
www.pachyonychia.org

Pachyonychia Congenita (PC)
Prounounced “Pack-e-o-nik-e-uh Kun-jen-i-ta”

About Pachyonychia Congenita (PC):
PC is a chronically disabling, ultra-rare autosomal dominant skin disorder caused by a mutation in one of five keratin genes: KRT6A, KRT6B, KRT6C, KRT16, or KRT17.  The most common physical symptoms are painful calluses and blisters on the soles of the feet which make walking difficult or impossible. Many patients crawl and rely on walking aids such as crutches or wheelchairs. Other common features of PC include palmar keratoderma, nail dystrophy, oral leukokeratosis, follicular hyperkeratosis and for some patients, cysts, which can also be extremely painful.  Currently, there is no cure or effective treatment for PC. Patients manage their own symptoms with frequent trimming and filing of the thickened calluses and nails.

PeDRA
www.pedraresearch.org

The Pediatric Dermatology Research Alliance (PeDRA) is a nonprofit research organization driven by the mission to create, inspire, and sustain research to prevent, treat, and cure childhood skin disease and vision of changing lives and healing children with skin disease through collaboration and discovery.  PeDRA has more than 300 active members across more than 140 institutions, deep connections with the patient advocacy community, and offers support to aspiring and established clinician scientists through education, infrastructure, funding, and a robust annual conference.

The Sturge-Weber Foundation
www.sturge-weber.org

Sturge-Weber Syndrome: \ ‘sterj – ‘web-er- \ (SWS) – know as a rare neurological skin disorder characterized by nervous system problems and a permanent birthmark, knows as a Port Wine Birthmark (PWB), usually on the face. SWS affects approximately 1 in 40,000 to 1 in 400,000 globally and fewer than 200,000 in the U.S.

Vitiligo Support International
www.vitiligosupport.org

Vitiligo is a genetic, autoimmune skin disease causing loss of pigment.

3 Major Types of Vitiligo:

Non-Segmental Vitiligo (NSV) includes all types of vitiligo except segmental, such as focal vitiligo (pigment loss limited to one, or very few areas), acrofacial vitiligo (pigment loss occurring only on the face and extremities such as hands and feet), and the most common, generalized vitiligo (pigment loss on both side of the body in a mirror-like image, such as both hands or both knees). NSV typically begins on areas such as the hands, wrists, around the eyes or mouth, or on the feet, then spreads to areas such as the neck, chest, knees and legs. NSV is considered to be progressive, but has cycles of spreading and cycles of stability.

XP Family Support Group
www.xpfamilysupport.org

The XP Family Support Group is dedicated to improving the quality of life of those affected with Xeroderma Pigmentosum through education and support services, researching effective treatments.

AFFILIATE MEMBERS

American Academy of Dermatology
www.aad.org

The American Academy of Dermatology is the largest, most influential, and representative dermatology group in the United States. Find resources on membership, AAD meetings, education, practice management, publications, clinical care, and more.

Canadian Skin Patient Alliance
www.canadianskin.ca

Who we are:
The Canadian Skin Patient Alliance (CSPA) is a national non-profit organization dedicated to advocate, educate and support Canadians with skin diseases, conditions and traumas.

Derma Care Access Network
www.dermacareaccess.org

WHO WE ARE:
Comprised of over 40 non-profit advocacy and professional organizations, The Derma Care Access Network (DCAN),  is an independent, non-profit stakeholder coalition focused on appropriate access to patient centered skin care and sponsors educational initiatives and advocacy programs designed to encourage informed policymaking about the benefits of access to patient centered dermatological care.

These programs provide the foundational capacity for developing a network of engaged advocates who are trained, organized and activated in furtherance of DCAN’s mission.

Dermatology Nurses’ Association
www.dnanurse.org

Mission Statement:
The Dermatology Nurses’ Association is a professional nursing organization comprised of a diverse group of individuals committed to quality care through sharing knowledge and expertise.

International Alliance of Dermatology
Patient Organizations (IADPO)

www.globalskin.org

The International Alliance of Dermatology Patient Organizations (IADPO, also known as GlobalSkin) is a unique global alliance that is committed to improving the lives of all people living with dermatological conditions worldwide through research, advocacy and support.