🌟 #FollowFriday Spotlight 🌟 This week, we’re proud to highlight Rare Disease Ghana Initiative! Rare Disease Ghana Initiative is a vital organization working to support individuals and families affected by rare diseases across #Ghana. Through awareness campaigns, advocacy, and access to resources, they strive to improve the lives of people with rare diseases and work toward better healthcare for all. ✨ Why Follow Rare Disease Ghana Initiative? ➡️ Stay updated on the latest in rare disease advocacy and care. ➡️ Access valuable resources and support for rare disease patients and families. ➡️ Join a community committed to raising awareness and improving healthcare access. 🌐 Learn more and show your support at rarediseaseghana.org 👉 Follow them on: Facebook: https://lnkd.in/eKqm_KK8 Twitter: https://lnkd.in/e62XdKAR #RareDiseaseGhana #RareDiseases #Support #Advocacy #Healthcare #GlobalSkinMemberLove #SkinMatters
GlobalSkin - International Alliance of Dermatology Patient Organizations
Wellness and Fitness Services
Ottawa, ON 2,165 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
-
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
-
Primary
Get directions
43 Florence Street
Ottawa, ON K2P 0W6, CA
Employees at GlobalSkin - International Alliance of Dermatology Patient Organizations
Updates
-
GlobalSkin recently participated in the 12th PeDRA Annual Conference, in Phoenix, AZ, focused on innovative solutions to advance pediatric dermatology research. Throughout the event, GlobalSkin actively engaged with various Members and industry partners, and exchanged ideas to enhance advocacy efforts for children affected by skin conditions. We are proud to have contributed to these important discussions as a member of the Patient Advisory Committee. #PeDRA2024 #PatientAdvocacy #PediatricDermatologyResearch #GlobalSkin
-
-
🌍✨ GlobalSkin Members Get Ready - The GlobalSkin 2025 Conference is headed to #Prague 📅 Mark your calendars because something BIG is on the horizon! GlobalSkin is heading to the beautiful city of Prague for the April 24 - 27, 2025 GlobalSkin Conference, and registrations are opening soon! Our theme for 2025 is "Champion" – aimed at inspiring, connecting, and celebrating our Community of Champions who tirelessly advocate for better care and support for those affected by skin conditions worldwide. Stay tuned for the official registration announcement—as a GlobalSkin Member you don’t want to miss this incredible opportunity! 🗓️ 🔗Learn more: https://lnkd.in/gB3trk9 #GlobalSkin2025 #ChampionSkinHealth #Prague2025 #GlobalSkinInPrague2025 #Dermatology #PatientAdvocacy #SkinHealth #CommunityOfChampions #SkinMatters
-
-
It was fantastic being in Doha last week for the ISAD Society’s annual conference with our GlobalSkin - International Alliance of Dermatology Patient Organizations delegation: Tina Mesarič Melanie Funk Tonya Winders Vildana Mujkic Appreciation to Alain TAIEB Jean-Francois Stalder Peter Schmid-Grendelmeier for their efforts to include patients and patient organizations in the programming. Looking forward to continuing to grow this collaboration. #eczema #dermatology #atopiceczema #atopicdermatitis
It's been a very productive week at the 14th Georg Rajka Symposium in Doha for GlobalSkin and our incredible patient leaders from the Atopic Eczema Community. We’ve engaged with global experts, attended a WHO meeting, shared insights, and strengthened our efforts to support the Atopic Eczema Community. We continue to shine the spotlight on patient organizations and the important support they provide to people living with atopic eczema. Thank you to everyone who attended the Skin Matters Reception and to the Global Atopic Dermatitis Atlas and the ISAD Society for our ongoing collaborations. We'll look forward to next year's event. #AtopicEczema #ISAD2024
-
-
-
-
-
+3
-
-
Attention GlobalSkin Members - check out this new journal article by International Rare Diseases Research Consortium (IRDiRC)
🚨 New IRDiRC Publication Alert! 🚨 "Telehealth for Rare Disease Care, Research, and Education Across the Globe: A Review of the Literature" is now available! This review, conducted by the IRDiRC Telehealth Task Force, explores the evolving role of Telehealth (TH) in improving the diagnosis, care, research, and education for rare diseases (RDs). The study highlights: ➡️ The rise in TH use, particularly during the COVID-19 pandemic ➡️ The ability of TH to overcome geographical barriers for RD patients ➡️ The potential of TH to decentralize and enhance RD research ➡️ Opportunities for integrating digital health technologies like mHealth and wearables While TH offers significant benefits, the report also discusses its limitations and the need to address potential health disparities caused by unequal access to technology and digital literacy gaps. 📰 Read the full article here: https://lnkd.in/e3DhbuMx #IRDiRCpublication #Telehealth #RareDiseases #DigitalHealth Adam Hartman Melissa Parisi Faye Chen
-
-
Last week, the recipients of the 2024 GlobalSkin Patient Expert Scholarship convened in Madrid for a four-day in-person training and their long-awaited graduation from EUPATI Patient Expert Training Programme. These remarkable individuals have invested months mastering the intricacies of the medicines development process, and now they’re ready to bring this valuable knowledge back to their communities. Please join us in congratulating all the EUPATI Fellows this year. Their commitment to advancing patient advocacy in dermatology is truly inspiring, and we couldn’t be prouder of their accomplishments! #GlobalSkin #Dermatology #PatientExpertScholarship #EUPATI #Scholarship #PatientAdvocacy
-
-
Today is World Psoriasis Day! We join with our 31 psoriasis members and wider psoriasis community in this year's theme - Psoriatic Disease and the Family. Facing the complexities of psoriatic disease demands steadfast support. This includes recognizing the challenges faced not only by the individual with psoriatic disease but also by their loved ones. Both those directly impacted by psoriatic disease and their families warrant compassion and solidarity. Let's unite to raise awareness for psoriatic disease worldwide! Learn more about the campaign: https://lnkd.in/g_i2TkQm IFPA #psoriaticfamily #WorldPsoriasisDay2024
-
-
The 2025 International Scientific Conference on Albinism (ISCA 2025), will be held online from Jan 21-24, 2025. The conference serves as an opportunity to explore the latest biomedical research on albinism and identify ways to improve health outcomes for people living with the condition. Call for Abstracts and more info are now live. For details, visit https://lnkd.in/e428kjgm #ISCA2025 #Albinism #Conference #Dermatology #Research
-
-
It's been a very productive week at the 14th Georg Rajka Symposium in Doha for GlobalSkin and our incredible patient leaders from the Atopic Eczema Community. We’ve engaged with global experts, attended a WHO meeting, shared insights, and strengthened our efforts to support the Atopic Eczema Community. We continue to shine the spotlight on patient organizations and the important support they provide to people living with atopic eczema. Thank you to everyone who attended the Skin Matters Reception and to the Global Atopic Dermatitis Atlas and the ISAD Society for our ongoing collaborations. We'll look forward to next year's event. #AtopicEczema #ISAD2024
-
-
-
-
-
+3
-
-
🦋💙 October 25 is EB Awareness Day! 💙🦋 Today, we join our 16 patient organization members supporting people living with Epidermolysis Bullosa (EB) — a rare, painful skin condition often referred to as “Butterfly Skin.” Together, we can help raise awareness and shine a light on the challenges faced by EB patients and their families. But the awareness doesn’t stop here! Join in for EB Awareness Week (Oct 25 - 31) to spread hope, advocate for better care, and encourage research to find a cure. Let’s amplify the voices of the EB community and show our support for Debra International and all the amazing work being done to improve the lives of everyone living with EB. 🦋💙 Learn more and get involved: https://lnkd.in/e6QATiUp #EBAwarenessDay #EBAwarenessWeek2024 #ButterflySkin #EpidermolysisBullosa #DEBRAInternational #SupportEB #RaiseAwareness #SkinMatters
-