AIM AT MELANOMA
www.aimatmelanoma.org
info@AIMatMelanoma.org
Melanoma is a potentially fatal disease that is largely preventable. AIM at Melanoma raises awareness of preventive measures; provides support for patients, caregivers, and survivors; and funds critical research—all to end melanoma in our lifetime. AIM is dedicated to fighting the world’s deadliest skin cancer, melanoma.
American Academy of Dermatology (ADD)
www.aad.org
mrc@aad.org
The AAD is committed to: advancing the diagnosis and medical, surgical, and cosmetic treatment of the skin, hair, and nails; advocating high standards in clinical practice, education, and research in dermatology; and supporting and enhancing patient care for a lifetime of healthier skin, hair, and nails.
Children’s Skin Disease Foundation
www.csdf.org
ftenconi@csdf.org
Children impacted by skin disease represent a vulnerable population. While kids are affected by every manner of any disease, the burden of pediatric skin diseases are uniquely severe in the way they are compounded by the psychosocial consequences of a chronic, visual disease; often associated with much embarrassment, loss of daily function and low self-esteem. Children’s Skin Disease Foundation’s (CSDF) mission is to improve the lives of children with life-threatening and chronic skin disease and their families by offering wonderful experiences that will enrich their lives and empower them to have a childhood without limits.
Dermatitis Herpetiformis
celiac.org/about-celiac-disease/related-
conditions/dermatitis-herpetiformis/
icureceliac@celiac.org
Dermatitis herpetiformis, also known as DH and Duhring’s disease, is a chronic skin condition caused by a reaction to gluten ingestion. The vast majority of patients with DH also have an associated gluten-sensitive enteropathy (celiac disease). Extremely itchy bumps or blisters appear on both sides of the body, most often on the forearms near the elbows, as well as on knees and buttocks, and along the hairline.
Epidermolysis Bullosa Medical Research Foundation (EBMRF)
ebmrf.org
a.pett@bep-la.com
The EBMRF is a non-profit charity dedicated to raising awareness about Epidermolysis Bullosa (EB) and funding research for a cure. We are unique in that we pay no salaries or overhead, all work is done on a volunteer basis. EB is a rare, life-threatening disorder that causes the skin to tear and blister at a slight touch or trauma and also affects internal organs from constant scarring.
Gorlin Syndrome Alliance
www.gorlinsyndrome.org
info@gorlinsyndrome.org
The Gorlin Syndrome Alliance is a non-profit organization whose mission is to thoughtfully support, comprehensively educate, and aggressively seek the best treatments and a cure for those affected by Gorlin syndrome. Gorlin syndrome, also known as nevoid basal cell carcinoma syndrome, basal cell carcinoma nevus syndrome, Gorlin-Goltz syndrome, or basal cell nevus syndrome, is a rare genetic disorder.
HS Connect
www.hsconnect.org/
contact@hsconnect.org
HS Connect supports many HS patients with medical supplies, ‘HS on the Go’ Emergency Kits, and other items that they may need in order to live with HS. Any donation, large or small, allows us to continue our work helping the community, putting out updated research, participating in recruiting for surveys, studies, and everything else that helps HS remain in the spotlight!
International Association of Dermatology Patient Organizations (IADPO)
globalskin.org/
info@hsfoundation.org
The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) is a unique global alliance, committed to improving the lives of patients worldwide. We nurture relationships with members, partners, and all involved in healthcare – building dialogue with decision-makers around the globe to promote patient-centric healthcare. GlobalSkin’s work is founded on three pillars: research, advocacy, and support. Create a world where people with dermatological conditions are healthy and fulfilled.
International Forum for the Study of Itch
www.itchforum.net/
Elke.Weisshaar@med.uni-heidelberg.de
Our mission is to advance itch-related research and education and to promote treatment and clinical efforts to help alleviate this debilitating symptom. Our main goal is to create an active society that will contribute to the study of Itch. IFSI also distributes recent information about pruritus research and developments by newsletters to its members, the international medical community, and the public at large through various media. IFSI conducts international meetings every second year (World Congress of Itch, WCI) where researchers present the latest findings in the field. The official Journal of the IFSI is The Itch, an open-access journal. IFSI supports the publication of high-quality papers in Itch, which is currently offering waivers of publication fees for submitted articles.
Mycosis Fungoides Foundation
www.clfoundation.org/mycosis-fungoides
info@clfoundation.org
Mycosis fungoides is the most common form of cutaneous T-cell lymphoma (CTCL). Mycosis fungoides” and “CTCL” are often used interchangeably, which is imprecise, as mycosis fungoides is just one type of CTCL. Learn more about how it is diagnosed, treated and its prognosis.
National Eczema Association (NEA)
nationaleczema.org
helpline@eczema.org
The National Eczema Association (NEA) is a non-profit organization dedicated to informing, educating, and providing resources for individuals affected by eczema; increasing public awareness of the disease; supporting research to discover the cause, treatment, and cure of atopic dermatitis-eczema; and represent individuals with eczema in order to help improve their quality of life. Resources for people living with eczema, atopic dermatitis, nummular eczema, nummular dermatitis, and how to help babies & children with eczema.
National Organization for Albinism and Hypopigmentation
www.albinism.org/
webmaster@albinism.org
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.
National Organization of Vascular Anomalies (NOVA)
www.issva.org/
info@issva.org
National Organization of Vascular Anomalies operates as a non-profit organization. The Organization provides assistance to patients and their families affected by vascular anomalies including hemangioma, vascular malformations, and related syndromes. National Organization of Vascular Anomalies serves communities in the United States.
Nevus Outreach
www.nevus.org
laurenisbell@nevus.org
Nevus Outreach deals with large congenital melanocytic nevi. Nevus Outreach is dedicated to bringing awareness, providing support, and finding cures for people affected by congenital melanocytic nevi and related disorders. Founded in 1997 by three families of people with giant nevi, Nevus Outreach has worked tirelessly to improve the lives of people with large nevi. The Board of Directors are located throughout the USA and Canada, the Medical Advisory Committee is made up of top melanocytic nevus physicians worldwide, and the Nevus Science Group is made up of top melanocytic cell scientists and physicians worldwide.
Scleroderma Research Foundation
srfcure.org/
scfcure.org/contact/
The mission of the Scleroderma Research Foundation (SRF) is to fund and facilitate the most promising, highest-quality research aimed at improved therapies and, ultimately, a cure for scleroderma. When scleroderma patient Sharon Monsky founded this organization, she knew that a cure would not come in her lifetime. Still, she set out to develop a foundation that would deliver life-changing results by bringing the brightest minds in science together and harnessing the power of technology to accelerate the progress of scleroderma research. Since our inception in 1987, we have grown to be the largest nonprofit investor in scleroderma research in the United States.
The American Vitiligo Research Foundation
avrf.org
info@vrfoundation.org
The American Vitiligo Research Foundation (AVRF) provides public awareness about vitiligo through dedicated work, education, and counseling. We seek to make a difference worldwide for those afflicted by the disease, focusing on children and their families. Vitiligo can affect any race, any age, any gender, anywhere. There is no known cure for Vitiligo. Until there is a cure, we must continue to educate people about this disease in order that those affected are not discriminated against. We embrace diversity and encourage acceptance. The AVRF encourages higher ethical standards in research and therefore supports finding a cure through alternatives to animal testing.
The National Rosacea Society
www.rosacea.org/
infor@rosacea.org
The National Rosacea Society is dedicated to raising awareness, providing in-depth information, and funding research to improve the lives of those with rosacea. Rosacea (pronounced “roh-ZAY-sha”) is a chronic but treatable skin condition that primarily affects the central face and is often characterized by flare-ups and remissions. Although rosacea may develop in many ways and at any age, patient surveys indicate that it typically begins any time after age 30 as flushing or redness on the cheeks, nose, chin or forehead that may come and go. Studies have shown that over time the redness tends to become ruddier and more persistent, and visible blood vessels may appear. Left untreated, inflammatory bumps and pimples often develop, and in severe cases — particularly in men — the nose may grow swollen and bumpy from excess tissue. In as many as 50 percent of patients, the eyes are also affected, feeling irritated and appearing watery or bloodshot.
The Sturge-Weber Foundation
sturge-weber.org/
swf@sturge-weber.org
The Sturge-Weber Foundation’s (The SWF) global mission is to improve the quality of life and care for people with The Sturge-Weber syndrome and associated Port-Wine Birthmark conditions through tenacious collaboration with clinical partners and pioneers, education, advocacy, research, and friendly support. Sturge-Weber syndrome (SWS) is a rare neurological skin disorder characterized by nervous system problems and a permanent 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.
World Health Organization’s – Leprosy
www.who.int/news-room/fact-sheets/detail/leprosy
amlep@leprosy.org
Leprosy is an age-old disease and is described in the literature of ancient civilizations. It is a chronic infectious disease that is caused by a type of bacteria called Mycobacterium leprae. The disease affects the skin, the peripheral nerves, the mucosa of the upper respiratory tract, and the eyes. Leprosy is curable and treatment in the early stages can prevent disability. Apart from physical deformity, persons affected by leprosy also face stigmatization and discrimination.
American Academy of Allergy, Asthma & Immunology: AAAAI
education@acaai.org
https://www.aaaai.org/
The American Academy of Allergy, Asthma & Immunology (AAAAI) is the leading membership organization of more than 7,000 allergists/immunologists (in the United States, Canada, and 72 other countries) and patients’ trusted resource for allergies, asthma, and immune deficiency disorders. This membership includes allergists/immunologists, other medical specialists, allied health, and related healthcare professionals—all with a special interest in researching and treating allergic and immunologic diseases.
Amyloidosis Center – Boston University Chobanian & Avedisian School of Medicine
www.bu.edu/amyloid/
amyloid@bmc.org
Amyloidosis is a term for diseases that have in common the extracellular deposition of insoluble fibrillar proteins in tissues and organs. These are part of a growing group of diseases now thought to be caused by misfolding of proteins. The Amyloidosis Center studies the systemic types of amyloidoses defined under amyloid types. Other forms of amyloidosis include Alzheimer’s and other neurodegenerative diseases, prion diseases, serpinopathies, some of the cystic fibrosis, and others. A unifying feature of the amyloidoses is that the deposits share a common ß-pleated sheet structural conformation that confers unique staining properties.
Cutaneous Lymphoma Foundation
www.clfoundation.org/
Infor@clfoundation.org
The Cutaneous Lymphoma Foundation is an independent, non-profit patient advocacy organization dedicated to supporting every person affected by cutaneous lymphoma. cutaneous lymphomas are cancers of lymphocytes (a type of white blood cells) that primarily involve the skin. Cutaneous lymphomas are classified based on whether they are cancers of B-lymphocytes (B-cell) or T-lymphocytes (T-cell). A life free of cutaneous lymphoma. Eliminate the burden of cutaneous lymphoma by; Promoting awareness; Providing education; Advancing patient care; Fostering research.
Dystrophic Epidermolysis Bullosa Association of America (DEBRA)
www.debra.org
staff@debra.org
“Because the cost of doing nothing is too great” is an axiom that defines our mission and directs all of Debra of America’s actions as an organization. Debra of America’s mission is to improve the quality of life for all people living with EB. To achieve this, we do two things in parallel: we provide free programs and services to the EB Community in the United States and fund the most innovative research directed at symptom relief and a systemic cure.
Foundation for Ichthyosis and Related Skin Types (FIRST)
www.firstskinfoundation.org
info@firstskinfoundation.org
Above all, our mission is to improve lives and seek cures for those affected by ichthyosis and related skin types. FIRST provides information about ichthyosis through our website, via printed publications, our printed newsletter, and through our lobbying and advocacy efforts. Our signature event, the National Conference, provides attending families an opportunity to forge unforgettable connections with each other and to consult with leading medical experts.
Hamline University Lupus Organization
www.hamline.edu/
www.lupus.org/
info@lupus.org
We have redefined lupus research to expand efforts beyond funding research grants. Our approach is innovative and addresses the root problems that interfere with progress and sets a course to solve them. We focus on three critical goals; identify the cause of lupus, discover better ways to control symptoms and, ultimately find pathways to cure lupus. Lupus is a rheumatic or autoimmune disease that involves chronic inflammation of the joints, muscles, or other parts of the body. The majority of people with lupus have Systemic Lupus Erythematosus (SLE), which affects multiple organs in their body.
Hereditary Hemorrhagic Telangiectasia (Osler-Weber-Rendu Syndrome)
www.cedars-sinai.org/health-library/diseases-and-conditions/h/hereditary-hemorrhagic-telangiectasia-osler-weber-rendu-syndrome.html
hhtinfo@curehht.org
Hereditary hemorrhagic telangiectasia (Osler-Weber-Rendu syndrome) is a rare genetic disorder that affects the blood vessels in the body. In a normal circulatory system, the blood moves at high pressure through the larger blood vessels (arteries) into smaller vessels (arterioles and capillaries) before finally making its way into the small veins. The high pressure allows the blood to reach the veins, but in a healthy system, the pressure is much lower by the time the blood gets there. Hereditary hemorrhagic telangiectasia occurs when the arteries are directly connected to the veins, meaning that blood flows at high pressure into the veins, which are less flexible than the other blood vessels. This can result in the veins bursting (hemorrhage). When this happens near the surface of the skin, small red marks (telangiectases) appear on the skin.
International Hyperhidrosis Society
sweathelp.org
Info@SweatHelp.org
Hyperhidrosis is a serious medical condition characterized by excessive, uncontrollable sweating and the International Hyperhidrosis Society is the only global non-profit organization dedicated entirely to improving the lives of those affected by it. We are your source for reliable, up-to-date information about hyperhidrosis treatments and research. We’re also here to provide you with understanding and support. If your life is being ruined by sweating – you are NOT alone. Studies show that hyperhidrosis is common, severe, and emotionally damaging.
International Pemphigus Foundation
www.pemphigus.org
info@pemphigus.org
Our mission is to improve the quality of life for all those affected by pemphigus and pemphigoid through early diagnosis and support. To find a cure for pemphigus and pemphigoid.
National Alopecia Areata Foundation (NAAF)
www.naaf.org
info@naaf.org
National Alopecia Areata Foundation supports research to find a cure or acceptable treatment for alopecia areata, supports those with the disease, and educates the public about alopecia areata. Alopecia areata (AA) is a common cause of non-scaring hair loss that affects around 2% of people worldwide. AA is known to be generally caused by the immune system attacking hair follicles, but many details of this process remain unknown.
The (US) National Neurofibromatosis Foundation Inc.
www.nfnetwork.org/
admin@nfnnetwork.org
To find treatments and a cure for neurofibromatosis by promoting scientific research, improving clinical care, and providing outreach through education and awareness, while offering hope and support to those affected by NF. The NF Network’s goal is to eradicate the health issues, pain, isolation, and uncertainty that the diagnosis of NF inflicts. The NF Network provides opportunities for local NF organizations to share experiences. The network is a dynamic and growing open space for shared resources, the development of new tools, and the creation of innovative programs. It brings together groups from around the country to speak as one voice on national issues.
National Foundation for Ectodermal Dysplasia (NFED)
nfed.org
info@nfed.org
The National Foundation for Ectodermal Dysplasias (NFED) is the worldwide expert on ectodermal dysplasias and the only advocacy organization in the United States dedicated to those living with these disorders. Ectodermal dysplasias are inherited disorders that involve defects in the hair, nails, sweat glands, and teeth. When a person has at least two types of abnormal ectodermal features—for example, malformed teeth and extremely sparse hair—the individual is identified as being affected by ectodermal dysplasia.
National Psoriasis Foundation (NPF)
www.psoriasis.org
research@psoriasis.org
The mission of the National Psoriasis Foundation is to drive efforts to cure psoriatic disease and improve the lives of those affected. Over 8 million people in the U.S. have psoriasis. Nearly a third of them will develop psoriatic arthritis. A world without psoriatic disease and related burdens is possible. We won’t stop until you have the cure you deserve.
Pachyonychia Congenita (PC) Project
www.pachyonychia.org
info@pachyonchia.org
Pachyonychia Congenita Project is a US-based charity, dedicated to the international support of people with Pachyonychia Congenita (PC), a rare and painful genetic skin disorder. We engage with patients and professionals to find effective treatments and a cure for PC. We connect patients, researchers, physicians, and industry partners in a united and global effort to help those who suffer from the debilitating effects of PC.
The American Academy of Dermatology
www.aad.org/
mrc@aad.org
Promoting leadership in dermatology and excellence in patient care through education, research, and advocacy.” The AAD works to advance quality patient care, being an influential and trusted voice, providing leadership for the specialty while providing support for members and ensuring organizational vitality for the future. Headquartered in Rosemont, Illinois, the American Academy of Dermatology, founded in 1938, is the largest, most influential, and most representative of all dermatologic associations. With a membership of more than 20,500 physicians worldwide, the AAD is committed to advancing the diagnosis and medical, surgical, and cosmetic treatment of the skin, hair, and nails; advocating high standards in clinical practice, education, and research in dermatology; and supporting and enhancing patient care for a lifetime of healthier skin, hair, and nails.
The International Herpes Alliance
www.whathealth.com/organizations/i/intherpesalliance-int.html
info@herpes.org.uk
The International Herpes Alliance (IHA) was primarily launched in December 1999 as a non-profit making organization offering support and information to those with genital herpes, those helping to manage the condition, and national patient support groups around the world. The activities through which they hope to achieve this are varied and are detailed on this website. They include developing internationally relevant information about herpes that will be available free of charge via this website and can be adapted for regional use.
The Scleroderma Research Foundation
srfcure.org/
info@srfcure.org
The mission of the Scleroderma Research Foundation (SRF) is to fund and facilitate the most promising, highest-quality research aimed at improved therapies and, ultimately, a cure for scleroderma. SRF would deliver life-changing results by bringing the brightest minds in science together and harnessing the power of technology to accelerate the progress of scleroderma research. Since our inception in 1987, we have grown to be the largest nonprofit investor in scleroderma research in the United States.
The Xeroderma Pigmentosum (XP) Society
www.xps.org
www.xpfamilysupport.org
The Xeroderma Pigmentosum Society was founded in 1995 by Dan and Caren Mahar. The XP Society has grown to become the international authority for XP family support and provides information to help families make intelligent decisions in caregiving of UV-sensitive people. Through the generous donations of time, talent, and financial contributions, the XP Society is proud to offer Camp Sundown, the unique to-the-world night camp program and family retreat free of charge to XP patients and their families.
American Cancer Society
www.cancer.org
www.cancer.org/about-us/online-
help/contact-us.html
We are a leading cancer-fighting organization with a vision to end cancer as we know it, for everyone. We are improving the lives of people with cancer and their families as the only organization combating cancer through advocacy, research, and patient support, to ensure that everyone has an opportunity to prevent, detect, treat, and survive cancer.
Ataxia-Telangiectasia Children’s Project
www.atcp.org
info@atcp.org
Ataxia-telangiectasia, or “A-T,” is a progressive, degenerative disease that affects a startling variety of body systems. The first signs of the disease usually appear early in childhood (the toddler stage), when children begin to walk. Though they usually start walking at a normal age, they wobble or sway when walking, standing still, or sitting. In late pre-school and early school age, children with A-T develop difficulty naturally moving their eyes from one place to the next, and they develop slurred or distorted speech and swallowing problems.
Cutis Marmorata Telangiectatica Congenita (CMTC) Alliance
www.cmtcalliance.org
president@cmtcalliance.org
clinicaltrials@dermatology.wisc.edu
In 2011, the Global CMTC Alliance Organization was formed solely by US members, and originally given the name CMTC-OVM US. The documents were filed by an attorney to legally become a non-profit 501 (c) (3) charity organization. We are a global non-profit organization, whose activities are aimed at the well-being of people who suffer from vascular malformations such as CMTC (Cutis Marmorata Telangiectatica Congenita) and to stimulate the scientific research of such conditions. The objectives of the CMTC Alliance organization are focused to provide our members with knowledge, and medical support that can enhance their confidence and independence, and to empower them with the skills to meet their individual needs. Although we maintain all rights to CMTC-OVM US; in January of 2019, we were certified with the DBA name of CMTC Alliance.
Ehlers-Danlos National Foundation
www.ehlers-danlos.com/
www.ehlers-danlos.com/eds-helpline/
The Ehlers-Danlos Society is dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD. To create a world in which each person living with Ehlers-Danlos syndrome and hypermobility spectrum disorders has the right treatment and care at the right time for their specific needs.
Global Parents for Eczema Research
www.parentsforeczemaresearch.com
info@parentsforeczemaresearch.com
Global Parents for Eczema Research is a grassroots, parent-led non-profit organization that advances research and policy changes that lead to better treatments and prevention strategies for moderate to severe eczema in children. We also help patients and families with peer support and access to the latest and very best scientific information. Our mission is to improve the quality of life and reduce suffering for children with moderate to severe eczema and their families and our vision is a future in which no children suffer from eczema.
Histiocytosis Association
histio.org/
info@histio.org
The Histiocytosis Association is a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic disorders while leading the search for a cure. Histiocytic disorders are a group of diseases that occur when there is an over-production of white blood cells known as histiocytes that can lead to organ damage and tumor formation.
HS Foundation
www.hs-foundation.org/
grants@hs-foundation.org
The Heising-Simons Foundation is a family foundation based in Los Altos and San Francisco, California. The Foundation works with its many partners to advance sustainable solutions in climate and clean energy, enable groundbreaking research in science, enhance the education of our youngest learners, and support human rights for all people.
International Pemphigus & Pemphigoid Foundation
www.pemphigus.org
info@pemphigus.org
The International Pemphigus & Pemphigoid Foundation is a non-profit organization with a mission to improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support. Pemphigus and pemphigoid are rare, autoimmune blistering disorders that affect the skin and mucous membranes. Founded in 1994, the IPPF’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid and to provide patients and their caregivers with much-needed comfort and support so they can continue to live active, productive lives.
Lupus Foundation of America, Inc.
www.lupus.org
info@lupus.org
Our mission is to improve the quality of life for all people affected by lupus through programs of research, education, support, and advocacy. We are focused on achieving the following disease-specific outcomes. Lupus research provides insight into the underlying causes of lupus and its progression while creating unprecedented opportunities to expand the future knowledge base for lupus.
National Association for Pseudoxanthoma Elasticum
www.napeusa.com/
NAPEStLouis@sbcglobal.net
The National Association for Pseudoxanthoma Elasticum (NAPE), established in 1988, is a non-profit organization dedicated to the support and education of patients, their families and friends, and the medical and research profession regarding pseudoxanthoma elasticum (PXE). PXE is a rare connective tissue disease that is inherited and progressive and affects the elastic tissues of the body. NAPE promotes patient advocacy, provides an educational brochure, produces and distributes quarterly newsletters to affected individuals, families, and healthcare professionals, and organize an annual conference to help those with PXE meet other with PXE and provide additional support and education. NAPE also sponsors a program to help members purchase low-vision aids that they might not be able to afford otherwise.
National Incontinentia Pigmenti Foundation
www.firstskinfoundation.org/
info@firstskinfoundation.org
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. Each year, more than 16,000 babies are born with some form of ichthyosis. A study has determined that approximately 300 babies are born each year with a moderate to severe form of ichthyosis. Ichthyosis affects people of all ages, races, and gender. The disease usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime.
National Organization for Rare Disorders
rarediseases.org/
bbs@rarediseases.org
The mission of NORD is to improve the health and well-being of people with rare diseases by driving advances in care, research, and policy. NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, we elevate care, advance research, and drive in a purposeful and holistic manner to lift up the rare disease community. NORD helps drive more effective government policies by elevating the voice of the rare disease community.
National Scleroderma Foundation
www.scleroderma.org/
info@scleroderma.org
To know scleroderma is to understand the impact of a rare disease that is life-threatening for many and can cause physical disabilities and change lives forever. The National Scleroderma Foundation designates June as scleroderma awareness month. Our message this year is to “know scleroderma.” Anyone can have scleroderma. The cause is still unknown and there is no cure. The National Scleroderma Foundation is leading the way in funding peer-reviewed, innovative research. We can help you to know scleroderma and find your best path forward. The more you know scleroderma, the closer we get to overcoming scleroderma.
PHACE Syndrome Community
www.phacesyndromecommunity.org/
info@phacesyndromecommunity.org
The PHACE Syndrome Community is a United States 501(c)(3) non-profit dedicated to serving those affected with PHACE and their surrounding family, friends, and community. The organization prospers through the generosity of the community. We encourage all to participate and make whatever time or resource contribution that is possible so you can make a difference for people living with PHACE Syndrome.
The American Behçet’s Disease Association
www.behcets.com/
ABDAparty@behcets.com
The ABDA’s efforts aim to affect change, actively work on proposals to protect and improve key policies at local, state, and federal levels, and ultimately improve patient outcomes and quality of life. Addressing issues such as access to care, treatment innovations, research, and healthcare policies, the voice of those affected by Behcet’s Disease and rare diseases is of utmost importance.
The Vitiligo Support International
vitiligosupport.org/
info@vsi.org
VSI is a patient-driven 501(c)(3) nonprofit organization offering a comprehensive resource of vitiligo education, research, and awareness for those whose lives have been affected by vitiligo. We are here to address your questions and concerns and help you connect with our community. You will find the hope, support, and healing that can only be offered by those who understand best – those who have walked in your shoes. Vitiligo is a common, genetic, autoimmune skin disease in which there is a loss of pigment from areas of the skin resulting in irregular white spots or patches. The skin has a normal texture. Vitiligo may appear at any age. Although it is a progressive condition, many people experience years or decades without developing new spots.
The Skin Cancer Foundation
www.skincancer.org/
info@skincancer.org
The Skin Cancer Foundation’s mission is to provide information about skin cancer, (including public and physician education campaigns), encourage detection, and sponsor research. The website offers information on skin cancer, sun safety, and examining the skin for cancer. Since 1979, The Skin Cancer Foundation has made tremendous strides in helping people understand the importance of skin cancer prevention, early detection, and prompt, effective treatment.
Vascular Birthmarks Foundation
birthmark.org/
vbfpresident@gmail.com
The Vascular Birthmarks Foundation is an international charitable organization that networks families affected by vascular birthmarks, anomalies, and/or related syndromes (VBARS) to the appropriate medical professionals for evaluation and/or treatment, provides informational resources as well as sponsors physician education, mobilized medical missions trips, and supports research and programs that promote acceptance for individuals with birthmarks. We invite you to browse our site to find information and resources for patients and families affected by hemangioma, port wine stain, arteriovenous malformation, capillary malformation, lymphatic malformation, Sture-Weber syndrome, Klippe-Trenaunay syndrome, and any other type of vascular birthmark and syndrome. The Vascular Birthmarks Foundation has been making a difference for those with patients and families affected by vascular birthmarks and related syndromes for over 27 years.
