Support Education Research

Please leave this field empty

Scleroderma Foundation
Homepage | Forward to a Friend | Make a Donation
20th anniversary Scleroderma Foundation logo 72 dpi banner
eLetter #799 | February 1, 2019  

SF Logo Standard JPG


Call for Nominations

The Scleroderma Foundation seeks to expand its National Board membership among those who are actively involved at the chapter level and have expertise in: fundraising/development, social media/technology, accounting/finance, human resources, nonprofit boards, and general business. Retired and non-practicing health care professionals will also be considered. The deadline is March 22, 2019.

To suggest a candidate for consideration, please complete the online form:

2019 National Conference Chicago SF logo


Conference Scholarship Applications

National Patient Education Conference
July 19-20-21, Chicago, Illinois

Scholarship applications are now being accepted to attend the 2019 National Patient Education Conference. The deadline to apply is March 20, 2019.

Scholarships are for first-time attendees who have scleroderma, including adults and children, and a parent/caregiver of minor children who have scleroderma.  Download an application today.

Visit scleroderma.org/conference for details.

Sign up for conference e-Alerts.

Systemic Sclerosis Diffuse and Limited Brochure


Systemic Sclerosis:
Diffuse and Limited

An updated informational brochure (January 2019) describing the different types of systemic sclerosis (diffuse and limited) has been posted on the Scleroderma Foundation website.  The information was prepared in part by Philip Clements, M.D., and Suzanne Kafaja, M.D.

Visit the "Brochure Download" page of the National Office website to access the PDF.

brochure download

Conference 2018 Youth Parents


Virtual Support Group: 
Parents of Children with Scleroderma

Zoom Meeting:  February 6, 2019; 7:30 p.m.

Topic: "My child's not different, scleroderma is." 

Discuss helping your child adjust to the changes that a chronic illness can cause.  

register to attend
meeting ID: 123-128-151

Stress Graphic


Stress Management Group

Webinar Series, Thursdays in February
2/7, 2/14, 2/21, 2/28; 7-8 p.m. Mountain Time

The Rocky Mountain Chapter is hosting a four-week stress management skills training webinar series. Participants will learn how to manage stress using cognitive-behavioral strategies, relaxation, and effective coping strategies. 

The webinars will be co-facilitated by Alaina Carr, M.A., and Sydneyjane Roberts, M.A., both doctoral students in the University of Colorado Denver Clinical Psychology Program, under the supervision of Kristin Kilbourn, Ph.D., M.P.H.

You may join each session by computer, https://join.me/coscleroderma (enter your name and request to join) or by phone at (302) 202-5900 (enter conference ID 947-770-935).

needymeds logo.jpg


Becoming an Empowered Patient

Webinar:  February 13, 2019; 1:30 p.m. (ET)

Learn how advocating for yourself and being an active part of your own health care team can improve your health.  

webinar link

Rare Disease Day 2019 at NIH


Rare Disease Day at NIH

Thursday, February 28

Rare Disease Day® takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Each year, NCATS and the NIH Clinical Center (CC) sponsor Rare Disease Day at NIH as part of this global observance. This year’s global theme is “bridging health and social care (link is external).”

learn more

Patients Matter Video USFDA


Patients Matter Video Series

U.S. Food & Drug Administration

The Patients Matter Video Series is a series of short videos developed by FDA’s Patient Affairs Staff to teach patients and other stakeholders about FDA and patient engagement efforts. The video series is intended to educate patients and other stakeholders about FDA, encourage them to share their perspectives on living with a disease or condition, and provide information about how to contact the Agency.

watch video

Cleveland Clinic Ohio Logo


Research & Treatment Centers

Cleveland Clinic

The Scleroderma Foundation has formal affiliations with nearly 50 scleroderma research and treatment centers in the U.S. To be designated as a center, a clinic must:

  • Demonstrate expertise in the care of patients with scleroderma.
  • Conduct scleroderma research (clinical and/or observational and/or laboratory-based).
  • Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public.

The Cleveland Clinic is one of two scleroderma research and treatment centers in Ohio.

livebetter with pulmonary rehab
 

Pulmonary Rehabilitation

A new survey from the American Thoracic Society (ATS) found that patients with a chronic pulmonary disorder, such as COPD, don't know their disease outranks stroke, diabetes or Alzheimer’s as a leading cause of death. The good news is that pulmonary rehabilitation is proven to help.

Live Better with Pulmonary Rehabilitation is a pilot project of the ATS and the Gawlicki Family Foundation to increase public awareness of pulmonary rehabilitation.

Learn more at www.livebetter.org

Mayo Inspire Kari Ulrich
 

Grieving the Loss of Your Physician

by Kari Ulrich

This patient story is part of Experts by Experience, a collaboration between Inspire and Mayo Clinic Connect, which are online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications by uncovering opportunities for quality improvement.

read more

Reach for the Cure The Bittmanns
Karen & Bruce Bittmann

 

Reach for the Cure

“I wish I could have known my Mom," said Bruce Bittmann. "I lost her as a five-year-old. Through this gift and others, we can honor and remember her, as well as help prevent other little five-year-olds from losing a mom.”

The need is great.  The time is now.  The choice is yours. Please give generously.

www.scleroderma.org/reachforthecure

Voice Fall 2018 Cover

Winter Voice Published Online Only

If you are a subscriber to Scleroderma Voice, you should note that the winter edition will be published online only.  By publishing one issue online, the Foundation reduces production costs and can use that savings toward other parts of our mission. 

Subscribers (Foundation members) will receive an email with a link to read the magazine online.

If you are a paid subscriber, please provide your current email address to ensure that you receive access to the winter Voice.

Contact webmaster@scleroderma.org,
or call (800) 722-4673.

 

 
QUICK LINKS
 
Advocacy
Contact Us
Become a Member
About Scleroderma
Calendar of Events
Online Chat
Store
Make a Gift
Home
 
SOCIAL MEDIA
 
Facebook
Twitter
Instagram
YouTube
 
SPONSORS
 

Actelion JSN 2018

 

Boehringer Ingelheim 2018 Platinum National Sponsor

 

Bayer 2018

 

2018 Gilead

 

United Therapeutics 2018 Bronze Conference Sponsor

 

reata_horizontal_logo-2018-Bronze Natl

 

Arena Pharmaceuticals 2018 Corp Conf Sponsor

 

Corbus 2018 Corp Conf Sponsor

 

Genentech 2018 Corp Conf Sponsor

 


 

   

Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

Powered by Blackbaud  Unsubscribe | Visit our web site | Contact Us | Donate
300 Rosewood Drive, Suite 105, Danvers, MA 01923 tel: 800-722-HOPE (4673)
© 2019 All rights reserved.