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| Rare Disease Day is Feb. 28. Join us all day, as we highlight scleroderma as a rare disease. Use #RareDiseaseDay and #scleroderma to help raise awareness. Are you or someone you know attending Rare Disease Day at the NIH in-person on Feb. 28, in metro Washington D.C.? Can you volunteer an hour or two at the National Scleroderma Foundation information table? Learn more about the event. If you are interested in volunteering, please email Caryn Anatriello, Manager of Advocacy & Support. |
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| ICYMI: AmazonSmile Update Thank you to everyone who supported us on AmazonSmile. Unfortunately, Amazon discontinued the program on Feb. 20.
Still want to help? Check out these three ways you can continue your impact at the National Scleroderma Foundation: scleroderma.org/amazonsmile-update/. |
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| Thank you, Horizon Therapeutics! Thank you to our Stepping Out to Cure Scleroderma Champion sponsor, Horizon Therapeutics.
We are proud to have them as a returning sponsor! |
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| National Scleroderma Foundation Membership Members of the National Scleroderma Foundation support our mission to advance medical research, promote disease awareness and provide support and education to people with scleroderma, their families and support networks.
This year, you can become a Champion member ($35 per year, $45 international) or a Friend member (free of charge).
Become a member yourself or give your loved one the gift of membership by completing the online membership form at scleroderma.org/membership or call us toll-free at (800) 722-HOPE [4673]. |
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| Mindy's scleroderma story
Mindy Quiat shares her scleroderma story as we continue celebrating the National Scleroderma Foundation's 25th anniversary. Thank you to Mindy for continuing to raise awareness of the disease and the need for a cure! Look for more from Mindy in the next edition of the Scleroderma Voice magazine. |
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| HealthWell Foundation Financial Assistance
If you are living with systemic sclerosis with interstitial lung disease (SSc-ILD), you may be eligible for financial assistance. The HealthWell Foundation has opened a new fund that will provide up to $9,000 in medication copayment or insurance premium assistance to eligible patients. To determine eligibility and apply for financial assistance, visit the link. |
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| 2023 National Scleroderma Conference and Kids Get Scleroderma, Too! Scholarship application is now available!
The 2023 National Scleroderma Conference and Kids Get Scleroderma, Too! Scholarship application is now available! Download the form and email it. Full instructions are on the form. The deadline to apply is March 31, so don't delay. Scholarships are intended for individuals who are living with scleroderma and are in need of financial assistance to attend the conference. Priority is given to first-time conference attendees, but all are welcome to apply. We look forward to seeing you in Orlando, July 14-16! |
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| Clinical Trials: what you need to know webinar Do you have questions related to clinical trials? How do they work? How can I join? Are they right for me? Join Maureen D. Mayes, M.D., and the National Scleroderma Foundation for an informative webinar on “Clinical Trials: what you need to know” at 1 p.m., Eastern Time, on March 20.
Thank you to Talaris Therapeutics for sponsoring this event! |
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| ICYMI: Apply for the RARE Compassion Program!
If you are interested in applying to the 2023 RARE Compassion Program, visit the RARE Compassion Program website to learn more and apply. |
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| Mogil's Mobcast with Nancy O'Brien and Deanna Hokanson On the recent episode of Mogil's Mobcast, Ann talks with Nancy O'Brien and Deanna Hokanson. Nancy is the co-creator of the Happiness Practice ™(THP), and Deanna is a facilitator for the program who has scleroderma. The group discusses the five principles of the happiness practice. |
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| Advances in Scleroderma Research Global Webinar The global community of scleroderma research scientists will come together at the next Advances in Scleroderma Research – Global Webinar at 9 a.m., Eastern Time, Friday, March 31, to share and discuss the latest breakthroughs from the field. The webinar is open to all interested scleroderma researchers, including students and trainees! |
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Tri-State Chapter wide meeting ZOOM: 7 p.m., Eastern, Wednesday, Feb. 27
Join the Tri-State Chapter for its upcoming meeting hosted by Caryn Anatriello, National Scleroderma Foundation manager of Advocacy & Support. During the meeting, the group will discuss national office updates and new research. |
| Parents of Children Living with Scleroderma ZOOM: 3 p.m., Eastern, Mar. 1
If you care for a child living with scleroderma, do not miss the Parents of Children with Scleroderma Online Support Group! The group covers various topics to help parents navigate caring for children with scleroderma and finding support. The group meets virtually via Zoom on the first Wednesday of even months (e.g., June, August, etc.) from 7:30 - 9 p.m., and the first Wednesday of odd months (e.g., July, September, etc.) from 3 - 4:30 p.m. Email Pamela Pour for the meeting information. |
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Localized Scleroderma Support Group Are you or your child living with localized scleroderma? The Foundation is starting a Virtual Localized Scleroderma Support Group. If you're interested in learning more or joining, please email localizedSG@scleroderma.org. |
| El Grupo Bilingüe de Apoyo de la Fundación Nacional de Esclerodermia te invita a su evento educativo vía zoom “Fenómeno de Raynaud”.
Fecha : 25 de Febrero
Hora: 11 a.m. EST
10 a.m. (Costa Rica, México)
11 a.m. (Colombia, Ecuador, Panamá, Perú, USA)
noon (Bolivia, Rep. Dominicana, Venezuela)
1 p.m. (Argentina, Chile)
5 p.m. (España)
Por favor envíe sus preguntas al correo electrónico miamiradgroup@gmail.com
A continuación, vínculo para registrarse al evento |
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