| | | Don't miss Rare Disease Day on Feb. 28! The National Scleroderma Foundation will join the rest of the world on Feb. 28 to call attention to rare diseases, for Rare Disease Day. From 8 a.m. to 5 p.m., Eastern Time. On that day, follow along with the Foundation’s social media pages, where we’ll highlight the faces of scleroderma on the hour. We encourage our community to raise awareness by using #Rare Disease Day and #scleroderma. The community can also use frames and images available on the Rare Disease Day website. 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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| | | Thank you to everyone who supported us on AmazonSmile. Unfortunately, Amazon will discontinue this program on Feb. 20.
Still want to help? Check out these 3 ways you can continue your impact at the National Scleroderma Foundation: https://scleroderma.org/amazonsmile-update/ |
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| | | Have you found your 2023 Stepping Out to Cure Scleroderma walk? The 2023 walk season has launched! Celebrate the 20th anniversary of Stepping Out to Cure Scleroderma in your community by finding your walk today. With more than 35 walks scheduled across the country – both in person and virtual - there is an opportunity for everyone to take part. Visit scleroderma.org/steppingout to sign up. Please remember, walks continue to be added regularly to this site. |
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| | | Today is National Caregivers Day! Thank you to all caregivers, especially those who care for individuals living with scleroderma. We appreciate you today and every day! |
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| | | 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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| | | Advances in Scleroderma Research Global Webinar Don't miss the Advances in Scleroderma Research - Global Webinar at 9 a.m., Eastern, Friday, March 31! The Global Webinar is a virtual forum to bring together the global scleroderma research community to hear the latest breakthroughs from the field. |
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| | | | The 20%: Males Living with Scleroderma ZOOM: 7 p.m., Eastern, Wednesday, Feb. 22
Scleroderma diagnoses are less common among males. In fact, only 20% of individuals living with scleroderma are male. We have designed a support group, especially for males with scleroderma. In it, you will learn scleroderma tips and resources and find support from others in your position. Each meeting will focus on a different topic from mental health to intimacy and so much more. The group meets on the fourth Wednesday of the month (with some exceptions) from 7 to 8 p.m., ET. |
| Teens & Parents Support Group ZOOM: 10 a.m., Mountain, Feb. 22
Calling all teens looking to connect with other teens living with scleroderma. The Albuquerque support group will have Teen & Parent Support Group meetings each month on the 4th Saturday via Zoom. The group will be led by Debra Droux, Maria Tafoya, and Jackie Martinez. Email nmsclero@gmail.com or call 505-503-3545 to receive the Zoom meeting information. We ask that a parent or caregiver be present with their teen when the meeting starts. |
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| | | 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 |
| BIPOC (Black, Indigenous People of Color) ZOOM: 4 p.m., Eastern Time, Sunday, Mar. 12
The BIPOC support group's next virtual meeting will be at 4 p.m. Eastern, Sunday, Mar. 12. This month's meeting will discuss staying active with scleroderma. |
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