Support Education Research
Please leave this field empty
Scleroderma Foundation
Homepage | Forward to a Friend | Make a Donation
eletter banner.jpg
eLetter #840 | November 22, 2019  

Giving Thanks 2019


Giving Thanks!

As the brilliant colors of autumn fill us with appreciation for nature’s beauty, our hearts are filled with gratitude for those who journey by our side.

As you celebrate Thanksgiving with family and friends, the Scleroderma Foundation gives thanks for your generosity and for your embrace of everyone touched by scleroderma.

Thank you!
Your friends at the Scleroderma Foundation

SPIN-SSLED Support Group Leader Training


Become a Support Group Leader

The Scleroderma Patient-centered Intervention Network (SPIN) Scleroderma Support Group Leader Education program (SPIN-SSLED) is a training program that provides potential new support group leaders with information and resources to help them feel more confident in their role.  

The program involves 13 weekly sessions of 60-90 minutes led a trained instructor, with each week tackling one aspect of leading a support group.  Participants can attend the online videoconference sessions from the comfort of their own homes.  Additional resources include a workbook, online forum, and online resource center with educational videos and activity ideas.

To be eligible, participants must be a member of the Scleroderma Foundation and be interested in starting a scleroderma support group in the near future, either online, by telephone, or in person.  Participants must be at least 18 years old and have regular access to a computer with an Internet connection.  

Details:  spinssled@gmail.com

SPIN-SSLED

2018 Capitol Hill Day Antics


Your Congressperson Loves Mail

Really!  That's how they know what you're thinking.  And, the Scleroderma Foundation has made it easy.  We wrote a letter for you.  All you have to do is print it, sign it, scan it, and email it to us.  We hand deliver the letters for you!

Go to scleroderma.org/advocacy to find the letters asking your U.S. Representative and Senators to co-sponsor H.R. 3446 and S. 2477, respectively.  

Email the signed letters to advocacy@scleroderma.org.  If you don't have a scanner, send them via U.S. Mail to Scleroderma Foundation, ATTN: Advocacy, 300 Rosewood Drive, Suite 105, Danvers, MA 01923.

The bills are identical and are titled National Commission on Scleroderma and Fibrotic Diseases Act of 2019. They are bipartisan and budget-neutral and are designed to improve coordination of research related to scleroderma and other fibrotic diseases that is already funded by the National Institutes of Health.

READ MORE

HealthCare.gov logo


November is Open Enrollment on HealthCare.gov

Don't wait!  HealthCare.gov is open for enrollment now.  Log in, fill out an application, compare plans and premiums, and enroll.

Enter your zip code to determine whether your state has its own healthcare connector or HealthCare.gov.  

2020 PLANS & PRICES

PH Awareness Month 2019 graphic III

November is Pulmonary Hypertension Awareness Month

Anyone can be diagnosed with pulmonary hypertension (PH). Common symptoms include breathlessness, fatigue, dizziness, fainting, chest pain, and swelling in the arms and legs. If you're experiencing these symptoms, consider speaking to your doctor about getting screened for PH.

LEARN MORE

needymeds logo.jpg
Raynaud's Association Logo.jpg


10 Myths About Raynaud's Phenomenon
WEBINAR: Tue., Dec. 10, 1:30 - 2:30 p.m. Eastern

Get the facts for a warmer, more comfortable life. NeedyMeds' partner, the Raynaud's Association, will offer resources for support and education to help those living with Raynaud's to lead a fuller life.

REGISTER

US FDA Patients Matter Rare Disease


Patients Matter

Watch Patients Matter: How Rare Disease Patients Can Move Scientific Discovery Forward.  The video was produced by the U.S. Food & Drug Administration as part of its Patients Matter video series to share how individuals, caregivers, and advocates can get involved in natural history studies and clinical trials to help scientists develop treatments for rare diseases. The Patients Matter Video Series is a series of short videos developed by F.D.A.’s Patient Affairs Staff to teach individuals and other stakeholders about the F.D.A. and patient engagement efforts, and to encourage individuals to share their perspectives on living with a disease or condition.

VIDEO

myPHteam Fatigue


myPHteam

When you have pulmonary hypertension, sometimes the simplest tasks can be a struggle.

Join the conversation about handling fatigue.

 
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
 
Diamond National Sponsor

Actelion Plain

 

 
Platinum National Sponsor

Boehringer Ingelheim Plain

 

 
Corporate Sponsors
Bayer National Sponsor

Reata Logo.jpg

United Therapeutics Logo

CSL Behring logo

Corbus Pharmaceuticals Logo

 

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.