Dermatology Patient Support Groups

ALLERGY & ASTHMA NETWORK www.allergyasthmanetwork.org The mission of Allergy & Asthma Network is to end the needless death and suffering due to asthma, allergies, and related conditions through outreach, education, advocacy, and research. Allergy & Asthma Network, founded in 1985, has grown into the nation’s leading nonprofit patient-centered network. We unite patients, families, healthcare professionals, industry partners, advocates, and government decision-makers to improve health and quality of life for the 60 million people living with allergies, asthma, and related conditions. Our work is increasingly focused on achieving equitable and optimal health outcomes for adults and children living in underserved communities. American Academy of Dermatology https://www.aad.org/public The American Academy of Dermatology (AAD) was founded in 1938 and is the largest of all dermatologic associations. AAD is headquartered in Headquartered in Rosemont, Illinois and has 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. https://www.facebook.com/AADskin https://twitter.com/AADskin https://www.instagram.com/aadskin1/ https://www.pinterest.com/aadskin/ https://www.youtube.com/user/AcademyofDermatology American Behçet’s Disease Association https://www.behcets.com/ Originally known as the American Behçet’s Foundation, the organization was established in 1978 in Orange County, CA, by Sheila Gregory, the mother of a young Behçet’s patient. The name of the organization has changed throughout the years, but its mission of support, education, advocacy and research continues. In 1986 the organization was moved to Rochester, MN. In 1987, it was incorporated as a nonprofit organization under the name of American Behçet’s Association (ABA). The Medical Advisory Board was established in 1988.The Internal Revenue Service granted 501(c)3 nonprofit status to the ABA in 1989. The name was changed to American Behçet’s Disease Association (ABDA) in 1989, with the purpose of clarifying the nature and mission of the organization. Presently, the ABDA Business Office is located in Rochester, Michigan. Our Correspondence and Database Coordinator is located in New York and volunteer Executive Board members and Behçet’s community members are scattered throughout the country. https://www.facebook.com/ABDA.Behcets https://twitter.com/behcets_usa/ https://www.instagram.com/behcets_usa/ Autoimmune Association www.autoimmune.org The Autoimmune Association leads the fight against autoimmune disease by collaborating to improve healthcare, advance research, and support the community through every step of the journey. Beautifully Unblemished www.beautifullyunblemished.com Beautifully Unblemished Vitiligo Support Group, Inc. Beautifully Unblemished Vitiligo Support Group, Inc. is a Florida-based nonprofit founded in 2018. Our mission is to raise public awareness of vitiligo and provide support to individuals and families through education, healthcare, and outreach. We aim to inspire, empower, and encourage those affected by changes in appearance due to vitiligo. We offer: In-person support meetings in Central and South Florida Educational resources via our website, social media, and newsletters Information on clinical trials, patient surveys, treatment options, and research Our advocacy focuses on: Insurance recognition of vitiligo as a medical condition, not cosmetic Increased research funding toward a cure Funding for support programs including counseling and community outreach Raising vitiligo awareness across Florida communities Canadian Skin Patient Alliance www.canadianskin.ca 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. The CSPA serves as an umbrella organization for Canadian patient groups and organizations that focus on skin diseases, conditions and traumas. The mission of the CSPA is to promote skin health and improve the quality of life of Canadians living with skin conditions that affect skin, hair and nails, with a focus on the following priorities: Priority #1: Increase our presence by creating greater brand awareness, strong networks for patients and families and mutually supportive relationships with Affiliate Members. Priority #2: Empower patients and their families and Affiliate members through knowledge, education and access to information. Priority #3: Lead, as a respected voice, on key issues for skin patients and their families and Affiliate Members. https://www.facebook.com/CanadianSkin/ https://twitter.com/canadianskin https://www.instagram.com/canadianskin/ Children’s Tumor Foundation https://www.ctf.org/ https://www.ctf.org/contact The mission of the Children’s Tumor Foundation is to drive research, expand knowledge, and advance care for the NF community. https://www.facebook.com/childrenstumor https://twitter.com/childrenstumor https://www.linkedin.com/company/children’s-tumor-foundation/ https://www.instagram.com/childrenstumor/ https://www.youtube.com/childrenstumor Cicatricial Alopecia Research Foundation (CARF) www.carfintl.org http://www.carfintl.org/contact-us/ The Cicatricial Alopecia Research Foundation (CARF) was formed as a result of one person’s experience with scarring alopecia, or cicatricial alopecia. When the patient realized that little is known about such disorders, she decided, with the help of her doctor, to initiate a grassroots effort to raise funds to study the cicatricial alopecias. CARF is a non-profit organization that provides funds for research to find effective treatments and a cure for cicatricial alopecia. In addition to providing funds to research, the organization supports education and advocacy and works to raise public awareness. Since 2005, CARF has grown from a group of seven patients to include more than 5,000 patients who have received information through the patient support program, support groups, in-person meetings, and informative online resources. All of CARF’s work supports its mission of providing education and patient support, raising public awareness and advancing and promoting research. CARF believes in the power of community building and patients supporting each other. The goal is to spread awareness, educate, and do away with misconceptions surrounding cicatricial alopecia. CARF offers patient support through: In-person support group meetings throughout the United States Online, anonymous patient forum Frequent communications recapping the latest in cicatricial alopecia information and promoting positive, inspiring member stories Providing accurate, medically-vetted information free to patients through newly redesigned website Physician Referral Listing Promotion of clinical trials, research studies and patient surveys Offering highlights of impactful research Providing grants for research Opportunity to serve on Medical & Scientific Advisory Board and network with other leading hair researchers Present at biennial Patient Conference or through one of the online education modules https://www.facebook.com/CARFIntl/ https://www.linkedin.com/company/cicatricial-alopecia-research-foundation/ https://www.instagram.com/scarringalopecia/ https://www.youtube.com/channel/UCvUR0rSV6w1YZ3mBJvIZ4TA Cutaneous Lymphoma Foundation https://www.clfoundation.org https://www.clfoundation.org/contact-us The Cutaneous Lymphoma Foundation, a non-profit 501(c)(3) organization, is the only patient advocacy organization devoted solely to cutaneous lymphoma. Its mission is to support every person affected by cutaneous lymphoma by promoting awareness and education, advancing patient care and fostering research for the best possible outcomes. The Cutaneous Lymphoma Foundation serves the cutaneous lymphoma community by: Providing educational resources through our website, clfoundation.org, print publications, and live events. Live events include the annual 2-Day Conference, Patient Educational Forums, “Answers from the Experts” evenings, and Facebook Live webcasts. Advocating for patients by promoting awareness at the international and national level by raising the patient voice and perspective with policy makers. Promoting biomedical research in cutaneous lymphoma through strategic partnerships with medical and scientific research organizations, clinical investigators, and professional societies. The Cutaneous Lymphoma Foundation is a 501(c)(3) nonprofit organization supported by tax-deductible donations. https://www.facebook.com/clfoundation/ debra of America https://www.debra.org/ https://www.debra.org/about-us/connect-us Every year, 200 children are born with Epidermolysis Bullosa (EB) in the United States. That’s in addition to the approximately 25,000 people already living with EB. While that sounds like a large number of people with the disease, it’s considered rare. Regardless of the numbers, it’s the immense burden of EB that drives the need for a high level of patient support, and why we call EB “the worst disease you’ve never heard of”. People with EB live with constant excruciating physical pain, which is a huge factor for the emotional distress this disease causes. Coping with EB also inflicts tremendous financial challenges to the individuals and families affected. “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. We are dedicated to improving 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. https://www.facebook.com/DebraofAmerica/ https://twitter.com/debraOfAmerica https://www.linkedin.com/company/debra-of-america/ https://www.instagram.com/wefighteb/ https://debraofamerica.tumblr.com/ Derma Care Access Network www.dermacareaccess.org https://www.dermacareaccess.org/contact The Derma Care Access Network (DCAN) is an independent, non-profit stakeholder coalition focused on appropriate access to patient centered skin care. DCAN sponsors educational initiatives and advocacy programs designed to encourage about the of access to patient centered care. programs provide the for a network of who are and in of DCAN skin health through advocating for public that encourage the of and support the education of patients, healthcare and other promote the of of and skin and access to appropriate and patient centered skin treatment for all Foundation for & Skin The Foundation for & Skin is a advocacy organization dedicated to individuals and families affected by the skin the mission is to improve and for those affected by and related skin are a organization the challenges by this community and provide support with and of and to to all affected by that the with support and a cure for goal is to in a and in do and and provide and information about to the medical, social and educational of this community. provides support, education, and advocacy for individuals and families affected by supports research into the and cure for offers a of information to patients on their to and its from a to an at is information for and the for living with and the organizations goal is to provide and support, and resources throughout a person’s their mission is to improve and for those affected by and related skin Foundation for Research The mission of the Foundation for Research is to find treatments and a cure for is an disease by the of in one or more of the including skin, and is the leading international nonprofit organization dedicated to a cure for this disease and to improving care for include research, supporting patients, education, and Research for Research is an international coalition of of children with of and by The mission of this organization is to improve quality of life for children living with by advancing research that from the patient and are focused on improving outcomes and quality of life for children with through research, advocacy, and policy is focused on the patient and perspective to the research and and policy and on research that to the treatment and of with in strategic research, research, in public and information with Vitiligo Foundation The mission of the Vitiligo Foundation is to improve the quality of life for individuals with vitiligo through education, research, clinical and community is a the burden of vitiligo is through and cure. organization focuses on key strategic providing support and resources for individuals with and through research, and educational support for and awareness of following best in and and and the brand as related to vitiligo. 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