National Scleroderma Foundation

Homepage | Forward to a Friend | Make a Donation

eLetter #957 | February 18, 2022

	President's Day February 21, 2022 In observation of the President's Day holiday, the Foundation's National Office will be closed, Monday, February 21, 2022. Calls to (800) 722-4673 and emails to SFinfo@scleroderma.org will be answered on Tuesday, February 22. If you're searching for information about scleroderma, looking for a support group, or trying to locate a Designated Scleroderma Research and Treatment Center, you can find all of that information and more on our website. SCLERODERMA.ORG
	Rare Disease Day is 10 Days Away! Rare Disease Day is 10 days away, on February 28! We wrote an article about Rare Disease Day and why it’s so important for the scleroderma community. Read it here. READ
	I'm Not Alone “I was able to see other patients with similar situations and understand that I’m not alone in this journey.” Erion Moore’s journey with scleroderma began during college. In this video, he shares what support from the National Scleroderma Foundation has meant to him since his diagnosis. WATCH
	El Grupo Bilingüe de Apoyo El Grupo Bilingüe de Apoyo de la Fundación Nacional de Esclerodermia te invita a su reunión vía zoom “Esclerodermia. preguntas frecuentes responde el reumatólogo Dr. Rafael. Rivas-Chacón,” el próximo 19 de febrero del 2022 a las 9:00 a.m. (tiempo de Miami). Por favor envíe sus preguntas al correo electrónico miamiradgroup@gmail.com antes de la reunión. REGISTRARSE
	Caregiver Connection ZOOM: February 19, 2022; 10 a.m. Mountain All caregivers welcome. Sara Clement, Southern Colorado Support Group Leader, will be hosting. To attend, request the Zoom link by sending an email to Sara, at sarc56@gmail.com.
	The 20%: A Virtual Support Group for Males Living with Scleroderma ZOOM: February 23, 7 to 8 p.m. Eastern Topic: Depression and Anxiety Join our second virtual support group of the year on 2/23 from 7 to 8 p.m. Eastern. We’ll define depression and anxiety, identify common types and symptoms, and offer treatments and tools to help. There will be time at the end to have your questions answered, too. Register now and find support and hope in the community. REGISTER
	Rare Disease Day at NIH VIRTUAL: February 28, 2022; 10 a.m. - 6 p.m. Eastern On February 28, 2022, NIH (National Institutes of Health) will celebrate Rare Disease Day with a virtual conference to raise awareness about rare diseases, the people they affect, and NIH collaborations that address scientific challenges and advance research for new treatments. REGISTER
	How to Dance in the Rain VIRTUAL: February 26, 2022; 1 p.m. Eastern Life isn't about waiting for the storm to pass; it's about learning to dance in the rain. Offered by the Michigan chapter, the conference, How to Dance in the Rain, is a time for individuals with scleroderma, their loved ones, and caregivers to find hope and connect with one another. The event starts with opening remarks from Michigan Chapter Executive Director Laura Dyas and includes educational seminars from medical professionals, Q&A segments, exercises, and more. Click the link below on February 26 to attend. ATTEND
	Sharing Experiences in Rare Diseases Together VIRTUAL: March 4, 2022; 9 a.m. - 4:30 p.m. Eastern The FDA will host a virtual public meeting on March 4, 2022, 9:00 am to 4:30 pm EST, to join the global observance of Rare Disease Day. The theme is “Sharing Experiences in Rare Diseases Together.” Various stakeholders will share their perspectives on and experiences in rare disease product development. Visit the public meeting page to register for the event. If you are a person with a rare disease, caregiver or advocate who is interested in speaking on a panel about your engagement with the FDA, please indicate so in your registration. You are also encouraged to add a comment to the public docket FDA-2022-N-0116. Please visit the Office of Orphan Product Development’s Rare Disease Day webpage to learn more about other activities relevant to rare diseases and listen to stories from the rare disease community and FDA staff working on rare diseases. REGISTER
	BIPOC Support Group ZOOM: March 13, 4 - 5:30 p.m. Eastern TOPIC: Creativity & Art are Powerful Join Lucy Wong, veteran art speaker, and the BIPOC support group facilitators at their March 13 meeting. The topic will explore the power of creativity and art. Please register in advance. After registering, you will receive an email with meeting access details. REGISTER
	Advances in Scleroderma Research - Global Webinar ZOOM: April 1, 2022; 11 a.m. - 12:30 p.m. Eastern The goal of the Advances in Scleroderma Research - Global Webinar is to rapidly disseminate knowledge by promoting awareness of new advances, fostering new collaborations, creating new networks, encouraging early-stage investigators, and inspiring interested learners. Participation is free of charge and open to all interested scleroderma researchers, including trainees. Speakers & Topics: Ido Amit, PhD, and Chamutal Gur, PhD, Weizmann Institute of Science Victor J. Thannickal, MD, Tulane University Paul Hiebert, PhD, ETH Zürich REGISTER
	Living with Pulmonary Hypertension Check out this resource from myPHteam discussing living with pulmonary hypertension. Join the community of almost 42,000 for more resources as well as support and advice from others living with Pulmonary Hypertension. REGISTER
Advertisement

Advertisement