Support Education Research

Please leave this field empty

Scleroderma Foundation New England
Homepage | Forward to a Friend | Make a Donation
20th anniversary Scleroderma Foundation logo 72 dpi banner
eLetter #800 | February 8, 2019  

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.

Stretching Hands and Face Poole Brochure


Stretching Exercises for the Hand and Face

An updated brochure (January 2019) that outlines stretching exercises for the hand and face has been posted on the Scleroderma Foundation website. Stretching can help prevent or slow down the loss of motion in the joints.  The information was prepared by Janet L. Poole, Ph.D., O.T.R./L., professor, Occupational Therapy Graduate Program, University of New Mexico. Visit the "Brochure Download" page to access the PDF.

brochure download

Stress Graphic


Stress Management Group

Webinar Series, Thursdays in February
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 logo 2018 small


Rare Disease Day

"Bridging Health and Social Care"
Thursday, February 28

Rare Disease Day® takes place on the last day of February each year to raise awareness among the general public and policymakers about rare diseases and their impact on patients’ lives.

Visit the Rare Disease Day website to learn how you can spread the word through your social network online and in your community.

learn more

Penn Medicine Logo


Research & Treatment Centers

Penn Scleroderma Center

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.

In Pennsylvania, there are four scleroderma research and treatment centers, including the Penn Scleroderma Center, which has three locations: Hospital of the University of Pennsylvania (Philadelphia), Penn Medicine Radnor (Radnor), and Penn Medicine Valley Forge (Berwyn).

livebetter with pulmonary rehab
 

Pulmonary Rehabilitation

Most patients with a chronic pulmonary disorder have heard of oxygen therapy and medicine-based interventions such as inhalers as treatments for their disease, but only 38% have heard of pulmonary rehabilitation -- a proven treatment that improves quality of life. Raising awareness is key to getting patients the treatment they need.

Learn more

John Varga M.D.
John Varga, M.D.


Reach for the Cure

“The Scleroderma Foundation has made grants…that have allowed young people to get over this initial critical phase in their career when they begin to think about what area to work in in terms of their research. And, having that, even small grant, that allows them to focus on scleroderma has made the difference,” John Varga, M.D., Northwestern University.

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.