Parents of Children with Scleroderma Online Support Group

As a parent, you would do anything for your child. When you find out your child has scleroderma, you are likely filled with shock, confusion, and fear.  Luckily, the National Scleroderma Foundation Michigan Chapter designed a group to help parents of children with scleroderma. Each meeting, the group will focus on different juvenile scleroderma topics, from managing the needs of everyone in the house to self-care for caregivers. The group welcomes individuals to join, ask questions, find comfort, and leave with a sense of hope and support. The group meets virtually via Zoom on the first Wednesday of even months (e.g., June, August, etc.) at 7:30 p.m. Eastern.

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Become a Member

For only $25 a year ($35 USD for those living outside of the USA), you can support our mission and gain special access to our quarterly magazine, the Voice, along with a discounted registration fee to our annual National Scleroderma Conference.

Become a member yourself or give the gift of membership to a friend or family member by completing our online membership form or calling us toll-free at (800) 722-HOPE [4673].

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Scleroderma Patients Without Lung Disease Needed to Study a Non-invasive Lung Function Test to Predict Early Airway Injury.

National Jewish Health Rheumatology investigators are conducting a study of scleroderma patients without known lung disease to determine if a new lung function test (called Lung Clearance Index) can detect subtle small airway abnormalities that may predict development of lung scarring.
ClinicalTrials.gov NCT 04535245
 

Qualifications include:

-Diagnosis of scleroderma without lung disease by a board-certified rheumatologist.
-Men or women ages 21-75
-Must be able to perform seated breathing tests.

For more information and to enroll in this study, please contact:

Mary Gill RN at Gillm@njhealth.org or Principal investigator Richard Meehan MD at 303 398-1443.  

Co-investigators: Liudmila Kastsianok MD, Mehrnaz Maleki MD, Lauren Zell-Baan MPH, PhDc, and Kristen Demoruelle MD PhD.

Fathers with Scleroderma Needed for Survey Research Study on Parenting

Researchers from the University of New Mexico are seeking participants for a study exploring the impact of symptoms, such as pain and fatigue, on parenting in fathers who have systemic sclerosis (scleroderma). Fathers with scleroderma who have children 18 years and younger living with them may be eligible to participate in the survey study. This study was approved by the UNM Human Research Review Committee (HRRC 21-209). For more information about the study and the eligibility requirements, please contact Janet Poole PhD, OTR/L at jpoole@salud.unm.edu or (505) 272-8276.

SPIN Newly Diagnosed and Caregivers Virtual Support Groups

Are you living with scleroderma and identify as transgender, non-binary, Two-Spirit, or another non-cisgender identity? SPIN is looking for individuals to join an advisory team to provide input on projects related to the impact of sex/gender on scleroderma. If you are interested or would like more information, please contact spingeneral@gmail.com. 

LGBTQ+ Virtual Support Group

The National Scleroderma Foundation stands with LGBTQ+ members of our community across the country. If you are interested in starting/joining an LGBTQ+ scleroderma support group, please let us know!

Newly Diagnosed and Caregivers Virtual Support Groups

The National Scleroderma Foundation would like to invite members of our community who are interested in starting/joining a Newly Diagnosed or Caregivers virtual support group to please let us know! We will be creating a focus group for each support group to help determine best dates and times to meet, gauge participation, and find leaders and co-leaders for the support groups.

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