Scleroderma (skleh-roh-DUR-muh 🔊) is (1) a combination of many diseases, (2) can affect the body from the crown of one’s head to the soles of one’s feet, and (3) manifests both externally and internally.
Scleroderma causes severe pain, organ damage, and can be fatal. Because its symptoms mimic many other health issues, and patients often suffer from comorbidities, it is complex and difficult to diagnose. Many patients face long diagnosis and treatment delays, fragmented care, and significant physical, emotional, and financial burdens.
Rare Disease Advocacy Founder and President Karen Brown talks about her experience as a scleroderma patient on the PH Insights podcast.
Our aim for scleroderma advocacy
- Vision: To transform lives by advocating for scleroderma patients, caregivers, and those who are underrepresented by ethnicity, geography, nationality, and race.
- Mission: To save lives and enhance the quality of life for scleroderma patients and their caregivers.
- Goals:
- Empower scleroderma patients and caregivers with information to become effective advocates.
- Educate healthcare professionals about scleroderma and the importance of actively listening to patients and caregivers.
- Encourage pharmaceutical and biotech companies to ensure diverse patient representation in drug development and clinical trials, and to capture a full range of patient stories.
- Partner with medical schools to teach students about scleroderma.
- Transform global understanding of scleroderma through powerful storytelling.
What you can do
You can help to save, extend, and improve the quality of life for people affected by scleroderma and help others obtain earlier diagnosis and treatment.
- Take one of our surveys if you are a scleroderma patient, caregiver, or healthcare professional. Sharing your lived experiences will help us learn how people advocate for themselves and those they care for. The data will inform our future awareness and education efforts as well as the development of free toolkits to help scleroderma patients and caregivers be effective self-advocates.
- Share our information and surveys with people you know, including scleroderma patients, caregivers, healthcare providers, and anyone who may be struggling to get a diagnosis for their condition.
- Partner with us to create resources about diagnosing, treating, and living with scleroderma, and build community. Share our information and take our surveys.