🌟 #FollowFriday Spotlight 🌟 This week, we’re shining a light on the Gorlin Syndrome Alliance from #USA! The Gorlin Syndrome Alliance is committed to supporting individuals and families affected by Gorlin Syndrome, a rare genetic condition. They provide essential resources, foster community connections, and advocate for research and improved care for those living with the syndrome. Their mission is to raise awareness and offer hope through education, support, and empowerment. ✨ Why Follow Gorlin Syndrome Alliance? Stay informed about the latest research, treatments, and community news. Access resources to help manage life with Gorlin Syndrome. Join their mission to spread awareness and advocate for better care. 🌐 Learn more and show your support at gorlinsyndrome.org 👉 Follow them on: Facebook: https://lnkd.in/e6VqnpDJ Instagram: https://lnkd.in/gFf97jq #GorlinSyndromeAlliance #GorlinSyndrome #RareDiseases #Support #Advocacy #GlobalSkinMemberLove #SkinMatters
GlobalSkin - International Alliance of Dermatology Patient Organizations
Wellness and Fitness Services
Ottawa, ON 2,116 followers
A Global Alliance Serving Patient Organizations to Improve the Lives of Dermatology Patients Worldwide.
About us
The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) envisions a world in which people living with dermatological diseases and skin traumas can easily access the care and treatment they need, when they need it, and can live without stigmatization, persecution, or economic disadvantages due to their conditions. GlobalSkin is a not-for-profit organization working with more than 165 patient association members ─ located in over 50 countries representing more than 60 disease areas ─ to improve the lives of those affected by dermatological conditions throughout the world by: - Initiating dialogue and advocating for access to new and existing treatments, and dermatological care to improve patients’ quality of life; - Raising the awareness of the incidence of, and the challenges for, people living with serious dermatological diseases to create better understanding; - Supporting our Members, not-for-profit dermatology patient organizations, through education, global campaigning, sharing of best-practices and beneficial networking opportunities to strengthen support for patients and build a strong, inclusive movement; - Building special focus communities; and conducting patient–initiated research. We appeal as one voice to the World Health Organization and other key influencers to recognize the debilitating nature of dermatological disease so that more resources for research and treatment options are made readily available to those afflicted and in need of help. The common thread through these important initiatives is credible data, which we will collect in the first-ever global patient-initiated 'impact of skin disease’ research project, expected to have a profound and lasting impact on key decision-makers. By collecting data from the dermatology patient perspective to represent various real-life conditions around the world, the dermatological community will gain better awareness, making it easier to truly help patients.
- Website
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https://www.globalskin.org
External link for GlobalSkin - International Alliance of Dermatology Patient Organizations
- Industry
- Wellness and Fitness Services
- Company size
- 2-10 employees
- Headquarters
- Ottawa, ON
- Type
- Nonprofit
- Founded
- 2015
- Specialties
- Skin Health, Dermatology Patient Alliance, patient organization, advocacy, dermatology, skin disease, eczema, psoriasis, vitiligo, skin cancer, rare disease, acne, Hidradenitis suppurativa, albinism, birthmark, Pemphigus & Pemphigoid , Alopecia , XERODERMA PIGMENTOSUM, and Epidermolysis Bullosa
Locations
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Primary
43 Florence Street
Ottawa, ON K2P 0W6, CA
Employees at GlobalSkin - International Alliance of Dermatology Patient Organizations
Updates
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The patient leaders in the 2024 cohort of the GlobalSkin Patient Expert Scholarship Program have been working diligently on their EUPATI courses and are preparing for the final phase of their studies! At the end of October, they’ll come together in Barcelona for four days of in-person training and their graduation. We wish them all the best and look forward to seeing them use their enhanced knowledge of the medicines development process to strengthen their patient advocacy efforts. https://bit.ly/3NjaGI6 #GlobalSkin #Dermatology #PatientLeaders #EUPATI #Scholarship
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🧠✨ World Mental Health Day 2024 🌍💚 Today, we stand together to raise awareness about mental health and take action for a better future! A supportive work environment fosters mental health, providing purpose and stability. But poor working conditions can harm mental well-being, reducing both job satisfaction and productivity. 2024 theme is "Mental health at Work" Learn more: https://lnkd.in/gAH5P3QB #WorldMentalHealthDay #BreakTheStigma #SelfCare #GlobalAction #MentalHealthAtWork
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GlobalSkin had a successful presence at the recently-held #EADV2024 in Amsterdam, where we launched the groundbreaking PRIDD measure, the first fully validated dermatology impact tool applicable to all skin conditions. We also hosted the Skin Matters Reception, co-organized a scientific session where the development of PRIDD was presented, and held meetings with funding partners to discuss future collaborations. Our participation in the Patient Village amplified the patient voice, and GRIDD researchers engaged with attendees at the PRIDD exhibit booth. In addition, we organized a GlobalSkin-Europe Member Meeting and attended the EADV President’s Dinner. Read the full article outlining details of our activities at the congress: https://lnkd.in/eH9CjsAn #Dermatology #PatientVoice #PRIDD #SkinMatters #EADVCongress #GlobalSkin
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🌟 #FollowFriday Spotlight 🌟 This week, we’re excited to highlight Lichen Sclerosus Schweiz! 🇨🇭 Lichen Sclerosus Schweiz is a fantastic organization from #Switzerland, dedicated to supporting those affected by Lichen Sclerosus. They provide valuable resources, foster community connections, and work tirelessly to raise awareness about this chronic skin condition, empowering individuals and advocating for better care. ✨ Why Follow Lichen Sclerosus Schweiz? Stay informed on the latest news, research, and treatments for Lichen Sclerosus. Access helpful resources and a supportive community. Join their advocacy efforts to spread awareness and improve healthcare for those affected. 🌐 Learn more and show your support at lichensclerosus.ch 👉 Follow them on: Facebook: https://lnkd.in/e4D4KmXj Instagram: https://lnkd.in/emijTunF Twitter: https://lnkd.in/ey74MQPF #LichenSclerosusSchweiz #LichenSclerosus #Advocacy #GlobalSkinMemberLove #SkinMatters
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On October 5th, our member DEBRA Poland is organizing a hike to Babia Góra, one of the highest mountain peaks in Poland, to raise awareness about rare diseases and their impact on patients' daily lives. For details, visit https://debra-kd.pl/ #RareDiseases #BabiaGóra #DEBRAPoland #PatientAdvocacy #RareDERM
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Last week, GlobalSkin hosted an orientation session for the 2025 Patient Expert Scholarship awardees. The session served as an opportunity to connect, review the year ahead, and address any questions. Patient leaders also broke out into smaller learning groups for more in-depth conversations. Congrats again to the 2025 Patient Expert Scholarship recipients as they begin their journey in the EUPATI Patient Expert Training Programme! Learn more about the 2025 cohort here: https://bit.ly/PES-2025 #PatientLeaders #GlobalSkin #EUPATI2025
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Today is Global CMN Awareness Day! Congenital Melanocytic Nevi (CMN) is a rare condition characterized by the presence of multiple birthmarks or moles on the skin. Let’s come together to raise awareness, foster understanding, promote early diagnosis, and create a more inclusive world for those with CMN. https://lnkd.in/gPHgJJgd #GlobalCMNAwarenessDay #CMNAwareness #CelebrateDifferences
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🌟 #FollowFriday Spotlight 🌟 This week, we’re excited to highlight Psoriasis Philippines (PsorPhil)! PsorPhil is dedicated to supporting individuals with psoriasis by providing education, resources, and advocacy for better care and awareness. They empower people living with psoriasis to manage their condition and promote understanding throughout the community. ✨ Why Follow PsorPhil? Stay updated on the latest in psoriasis care and treatments. Access valuable resources and support networks. Join a community advocating for better healthcare and awareness. 🌐 Learn more about their mission at psorphil.org and show your support! 👉 Follow them on: Facebook: https://lnkd.in/etwHygk7 Instagram: https://lnkd.in/edY8ydYz Twitter: https://lnkd.in/eAFfDmus #PsorPhil #PsoriasisAwareness #SkinHealth #SkinMatters #Philippines #GlobalSkinMemberLove
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We are delighted to have the following new members join the GlobalSkin family: - Cure EB - Psoriasis Indonesia - L-TOFA L-TOFA - Stowarzyszenie Debra Polska Kruchy Dotyk - Chinese Organization for Scleroderma - Caring Matters Now - Childhood Tumour Trust - AsoNevus - Asociación Española de Nevus Gigante Congénito - My Skin Global - Psoriatic Disease UK - Psoriasis Association of Singapore We look forward to elevating the work of these patient organizations through our programs and contributing to better patient outcomes within their respective disease areas. If you're a dermatology patient organization and want to join our global alliance, learn more at https://lnkd.in/gBDihWV. #GlobalSkin #StrongerTogether #PatientAdvocacy #JoinTheMovement