Community Partners
We're proud to work collaboratively with the following organizations in the scleroderma, rare disease, and disability communities.
"The goal of Mogil’s Mobcast podcast is to have a central place for people afflicted with Scleroderma and a place for their families and friends to be informed by specialists in either Scleroderma or autoimmune topics. I will cover a wide range of topics like nutrition, medications, vitamins, and lifestyles. I will also showcase stories from others affected by Scleroderma and how they have dealt with the disease. My podcast can be found on Apple Podcasts or Spotify." — Ann Mogilevsky
The mission of the Pulmonary Fibrosis Foundation is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and health care providers.
PF Warriors is an international support network that provides support, education, inspiration, and hope to individuals and families affected by pulmonary fibrosis. Our mission is to help people facing a life-altering progressive lung condition to live their best possible lives after diagnosis.
phaware® is a 501(c)3 organization dedicated to raising global pulmonary hypertension awareness and creating innovative technology for research. Share your Scleroderma-PH story on “I'm Aware That I'm Rare: the phaware® podcast” series.
Project Scleroderma's two part mission is to raise the global level of scleroderma awareness through informative videos and documentaries as well as to support the patient community as they work to cope with the challenges presented by scleroderma.
Rare Disease Diversity Coalition (RDDC) brings together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color.
The Raynaud’s Association is a national non-profit (501c3) organization whose mission is to provide support and education to the millions of sufferers of Raynaud’s Phenomenon, an exaggerated sensitivity to cold temperatures. The Association seeks to raise awareness and educate the public about Raynaud’s, which can be painful and, for some, may cause serious blood vessel damage.
Scleroderma Canada is committed to promoting public awareness, educating and supporting those affected by Scleroderma, and funding research to find a cure. Until a cure is found, we are devoted to improving the quality of life for those with Scleroderma.
The Scleroderma Foundation of Greater Chicago (SFGC) has been serving the scleroderma community for more than 40 years. They provide education programs that connect you with experts in the field to help you understand scleroderma, explore treatment options, manage symptoms and improve quality of life. Their support groups provide a forum to share experiences and ask questions among a group of people who understand what you're going through, regardless of where you live. They work to stimulate and support research that will advance treatment and ultimately find the cause and cure for scleroderma.
Scleroderma & Raynaud's UK (SRUK) is the only UK Charity dedicated to improving the lives of people with scleroderma and Raynaud's phenomenon.
We are here to improve awareness and understanding of these conditions, to support those affected, fund groundbreaking research and ultimately, to find a cure.
The Waiting Room Entertainment is a resource and services hub for the disabled community at large. By providing interactive opportunities to followers that may not be able to access them for various reasons. The company consists of several programs that include Jacob’s Hugs Registry, Social Club, Speak Out, and Resource Corner.
The Scleroderma Foundation of Greater Washington DC is a dynamic organization dedicated to serving the scleroderma community through support, education, and research, with a mission to empower individuals living with scleroderma to lead better lives. Founded in 1991, the foundation has grown from a grassroots effort to a multi-state presence with a growing national influence, supporting researchers and patients on the East Coast.
Join the Scleroderma Awareness and Advocacy Team, representing the community and the Scleroderma Foundation of California, Chicago, and Washington DC. As an advocate, you can use your voice whether by sharing your story, educating your community, speaking to the media, or lobbying for change—to help raise awareness and make a lasting impact for the scleroderma community.
The Scleroderma Patient-centered Intervention Network (SPIN) is an organization of researchers, health care providers, and people living with scleroderma from around the world. SPIN's mission is to work with people with scleroderma to identify their needs and prioritize research in areas most important to them and to develop, test, and disseminate accessible programs that improve quality of life and empower people with scleroderma and their loved ones.
Scleroderma Outreach Northwest a 501(c)(3) nonprofit, bridges the gap for patients and families affected by scleroderma through support, advocacy, and education for both the community and healthcare providers.