Global Community for People Living with Rare/Uncommon Dermatological Conditions
Who: Patient organizations serving people living with rare/uncommon dermatological diseases. These organizations provide essential services, support and access to information; opportunities to link with other patients; connection to researchers; and speak up for access to care and treatment. You are welcome to become involved with this special GlobalSkin community within our wider community.
What: GlobalSkin is working with this unique community to significantly and measurably improve linkages for patient organization leaders; build capacity and coordination of a synchronized strategic approach to improve access to care; stimulate critical research; disseminate critical information; and improve treatment options for patients living with neglected rare or uncommon diseases.
Upcoming RareDERM Community Events
- Global Genes Virtual Webinar – March 23, 2021 (11:00am-1:30pm ET)
RareDERM Community Resources
International HS experts have recently established the Global HS COVID-19 Registry to better understand the risk of infection and clinical course, track outcomes, and inform treatments of pediatric and adult HS patients in the setting of COVID-19. HS clinicians worldwide are encouraged to report ALL cases of COVID-19 in HS patients, regardless of severity – including asymptomatic patients detected through public health screenings.
Patients may also contribute to the Registry.
Information about the Registry as well as a link to report cases can be found HERE.
The success of this global collaborative effort depends on active participation by providers who care for HS patients, so broad sharing of the registry with colleagues treating HS patients is encouraged.
The RareDERM Forum, the first event of its kind, brought together nearly 40 rare and uncommon dermatological disease patient group leaders from 13 countries. Participants benefitted from formal learning sessions and connecting with other patient leaders and dermatology stakeholders.
A primary objective of this two-day Forum was to begin building a cohesive community of rare dermatology disease patient organizations and supporting stakeholders to ensure the lives of these patients are positively and measurably impacted through improved care and treatment. Working in small groups and then as a larger plenary group, participants outlined broad goals, defined challenges and needs; and began developing a strategy to build a cohesive community to grow knowledge and skills; to help stimulate research; foster connectivity; and deliver advocacy. Several advisory committees were formed within the community and reports on their progress will be shared later this year.
Since the Forum, GlobalSkin has been actively working on a variety of follow up activities including a summary document; the formation of advisory committees of patient organizations to complete the next steps involving strategic planning, and the set up of an online collaboration tool for the patient leaders. We will keep you posted as progress continues to be made.
GlobalSkin is grateful to its partner on this community-building initiative: LEO Pharma.