Finding out that you or someone you love has MAS can be a lot to process. Whether you’re newly diagnosed, caring for someone, or simply looking to learn more, these helpful guides, videos, and resources are available for you and your loved ones.
Check out the following materials for more information about MAS and Gamifant.
Gamifant Cares resources and helpful information
Organizations that can help
These groups were all founded by families affected by HLH/MAS. They offer information about the condition and they fundraise for awareness, research, and treatment-related expenses. Visit their websites or use their contact information to get in touch and explore all they have to offer.
DISCLAIMER: All organizations listed are independent third parties or organizations over whom Sobi has no control and are provided solely for your information. Sobi has no responsibility for the content provided by these third parties.
HLH/MAS support groups
Systemic JIA Foundation
The Systemic JIA Foundation is dedicated to funding promising research about the causes and new treatment approaches for sJIA. They also provide information about potential studies for families affected by sJIA to participate in.
Eric’s Journey Foundation
Eric’s Journey Foundation is dedicated to raising awareness about HLH and other histiocytic disorders, and providing support for patients, families, and friends dealing with these diseases.
HLH Heroes Foundation
HLH Heroes Foundation was started in July 2021 by parents of children diagnosed with primary HLH. Their mission is to provide support to individuals and families impacted by HLH, so that their vision can be fulfilled: No One Fights Alone.
Histiocytosis Association
The Histiocytosis Association provides helpful information to patients and families dealing with primary HLH. It offers podcasts, webinars, videos, and more. The association can also help connect patients with doctors who have experience treating primary HLH.
Immune Deficiency Foundation
The Immune Deficiency Foundation (IDF) works to inform and connect families facing conditions like primary HLH. IDF hosts virtual meetings and offers lots of resources, including educational materials, newsletters, and fundraisers.
Liam’s Lighthouse Foundation
Liam’s Lighthouse Foundation (LLF) was founded in memory of a 1-year-old boy who lost his life to HLH. The LLF website provides an overview of HLH and links to information about stem cell donations, fundraising, and more.
AiArthritis
AiArthritis (autoinflammatory arthritis) offers a variety of awareness events, educational resources, and research initiatives for families impacted by autoinflammatory and autoimmune arthritis diseases like MAS and sJIA.
Arthritis Foundation
The Arthritis Foundation is one of the largest arthritis support communities, dedicated to supporting families dealing with arthritis-related diseases like MAS and sJIA. They provide support through awareness events, local educational programs, and more.
