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May 2022

The Oley Foundation’s Kidz Klub Virtual Meeting

May 5 @ 6:30 pm - 7:30 pm

Kidz Klub With Mary Wootten, Program Associate Parents and caregivers! We invite you and your children to participate in an Oley Kidz Virtual Zoom meeting on Thursday, May 5, 2022 6:30-7:30 PM EST. The Oley Kidz Virtual Zoom meeting is open to children who are on tube feeding or TPN therapy, their siblings, as well as children and grandchildren of those on therapy. We welcome all children that are touched in any capacity by tube feeding or TPN. To RSVP and…

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The Center for Chronic Illness: Parenting Chronic Illness Webinar

May 9 @ 4:00 pm - 5:00 pm

Parenting Chronic Illness Webinar A web-based peer support group for parents of children living with health challenges led by Natalie Hopkins, MSW 2nd Monday of each month from 4-5pm This program is currently meeting virtually. To sign up, visit www.supportgroupscentral.com/CCI

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MS Views and News’ Monthly Virtual Pilates Class

May 9 @ 7:00 pm - 8:00 pm

Monthly Virtual Pilates Class Webcast May 9, 2022, 7-8PM ET Featuring instructor Bri Rhea, Pilates and Mindful Movement Instructor   Click here to sign up.  

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MS Views and News’ MS Neuro TV: Speech and Swallowing Issues That Can Affect People with MS

May 10 @ 7:00 pm - 8:30 pm

MS Neuro TV: Speech and Swallowing Issues That Can Affect People With MS May 10, 2022 Sign up for this program to learn about common speech problems that can occur with multiple sclerosis, such as vocal weakness, slurred speech, dysarthria, and dysphonia. Presented by Caroline Conway, MA-SLP. Graduate Clinician Caroline Conway is a second-year graduate student at The Ohio State University studying speech-language pathology. After her mother was diagnosed with multiple sclerosis in 2015, she developed an interest in working…

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Huntington’s Disease Society of America’s What Huntington’s Tells Us About Living Live Storytelling Showcase

May 11 @ 7:00 pm - 9:00 pm
Regent Theatre, 7 Medford St
Arlington, VA 02474 United States
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$25

What Huntington's Tells Us About Living Live Story Telling Showcase May 11, 2022 7:00 PM Join five people impacted by Huntington's disease as they share their inspiring stories about how the disease has shaped their lives and their perspectives. Storytellers include caregivers, medical professionals, and people testing positive for the gene mutation. To learn more, click here.

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MS Views and News’ MS Views Now: Gait Issues and COVID-19

May 11 @ 7:00 pm - 8:30 pm

MS Views Now: Gait Issues and COVID-19 with Multiple Sclerosis May 11, 2022 With guest presenter Ben Thrower, MD Learn about gait issues such as walking and balance problems, foot drop, spasticity, and more. Come together online and learn with MS experts focused on addressing recent COVID-19 challenges being faced by the MS community. To register, click here.

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The Oley Foundation’s Tube Feeding/TPN Support Group for Patients and Caregivers

May 12 @ 6:30 pm - 7:30 pm

Tube Feeding/TPN Virtual Support Group with Mary Wootten, Program Associate We invite you to attend the Oley Tube Feeding/TPN Virtual Support Group for Patients & Caregivers on Thursday, May 12, 2022, 6:30 PM EST. Please email Mary at marywootten.oley@gmail.com to rsvp and for the Zoom link.

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The Center for Chronic Illness WA State Rare Chronic Illness Support Group

May 13 @ 1:30 pm - 2:30 pm

WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!

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World Alliance of Pituitary Organizations’ Webinar: Osteoporosis

May 19 @ 3:00 pm - 4:00 pm

Online Webinar: Osteoporosis With Dr. Elena Valassi May 19, 2022 Elena Valassi, MD, PhD is associate professor of endocrinology at the International University of Catalonia (UIC) and endocrinology consultant at the Hospital General de Catalunya and Hospital Sant Pau, Barcelona (Spain). She received the “Juan de la Cierva” postdoctoral grant from the Spanish Ministry of Economy and Competitiveness and was recently awarded two Health Care Research Fund Grant (FIS) from the Health Institute Carlos III to investigate the pathogenesis of…

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HCU Network America’s Classical HCU Parent-Caregiver Online Meetup

May 21 @ 10:00 am - 11:00 am

Classical HCU Parent-Caregiver Online Meetup May 21, 2022 at 10 AM Online meet-ups are an opportunity to connect parents & caregivers impacted by classical homocystinuria to with each other. Whether your child is 5 months old or 25 years old, parents, grandparents, and caregivers of those with HCU need support! Come join us for networking, tips, tricks, and conversation. To sign up, click here.

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The MDS Foundation’s 2022 Webinars: Precision Medicine in MDS and AML

May 21 @ 12:00 pm - 1:30 pm

Webinar: Precision Medicine in MDS and AML May 21, 2022 with Rory Shallis, MD, Yale School of Medicine, New Haven, CT Attend this webinar to learn about the role of personalized, precision medicine in the treatment of myelodysplastic syndromes (MDS). Learn about the importance of the latest treatment strategies and the role of genetic testing. To register, click here.

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The Aplastic Anemia and MDS International Foundation’s Aplastic Anemia, MDS, and PNH Virtual Support Group

May 28 @ 10:30 am - 11:30 am

The Aplastic Anemia, MDS, and PNH Virtual Support Group May 28, 2022 AAMDSIF is pleased to announce that we will host a support group for patients diagnosed with aplastic anemia, MDS and PNH. The group is hosted by AAMDSIF and will be monitored to ensure the privacy and safety of our participants. To register, click here.

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June 2022

The Center for Chronic Illness Web-Based Rare Chronic Illness Support Group

June 7 @ 7:00 pm - 8:00 pm

Web-Based Rare Chronic Illness Support Group A peer support group for those living with rare health challenges led by Kerry Heckman, MSW, LICSW 1st Tuesday of each month, 4-5pm PST / 7-8pm EST To sign up for free, visit www.supportgroupscentral.com/CCI

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The Center for Chronic Illness WA State Rare Chronic Illness Support Group

June 10 @ 1:30 pm - 2:30 pm

WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!

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The Aplastic Anemia and MDS International Foundation’s MDS Virtual Support Group

June 11 @ 1:00 pm - 2:00 pm

The Aplastic Anemia and MDS International Foundation's MDS Virtual Support Group June 11, 2022 AAMDSIF is pleased to announce that we will host a support group for patients diagnosed with MDS. The group is hosted by AAMDSIF and will be monitored to ensure the privacy and safety of our participants. To register, click here. 

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The Center for Chronic Illness: Parenting Chronic Illness Webinar

June 13 @ 4:00 pm - 5:00 pm

Parenting Chronic Illness Webinar A web-based peer support group for parents of children living with health challenges led by Natalie Hopkins, MSW 2nd Monday of each month from 4-5pm This program is currently meeting virtually. To sign up, visit www.supportgroupscentral.com/CCI

Find out more »

MS Views and News’ Monthly Virtual Pilates Class

June 13 @ 7:00 pm - 8:00 pm

Monthly Virtual Pilates Class Webcast June 13, 2022, 7-8PM ET Featuring instructor Bri Rhea, Pilates and Mindful Movement Instructor   Click here to sign up.

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The Aplastic Anemia and MDS International Foundation’s Pediatric Parents Virtual Support Group

June 14 @ 7:30 pm - 8:30 pm

The Aplastic Anemia and MDS International Foundation's Pediatric Parents Virtual Support Group June 14, 2022 This virtual support group is designed to support pediatric parents whose children have been diagnosed with aplastic anemia, MDS, PNH and PRCA. The group is hosted by AAMDSIF and will be monitored to ensure the privacy and safety of our participants. To register, click here.   

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The Aplastic Anemia and MDS International Foundation’s Transplant for MDS Virtual Support Group

June 15 @ 5:30 pm - 6:30 pm

The Aplastic Anemia and MDS International Foundation's Transplant for MDS Virtual Support Group June 15, 2022 AAMDSIF is pleased to announce that we will host a support group for patients who have undergone transplant or who are considering this as a curative option for bone marrow failure disease. The group is hosted by AAMDSIF and will be monitored to ensure the privacy and safety of our participants. To register, click here.   

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The FSHD Society’s 2022 FSHD Connect

June 18 - June 19
4025 Wards Rd
Lynchburg, VA 24502 United States
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$50

2022 FSHD Connect June 18-19, 2022 Orlando, FL An educated, empowered, and connected community can achieve extraordinary things! Every two years, the FSHD Connect conference brings together hundreds of patients, family members, researchers, and health experts for a day-and-a-half of immersive learning and community building. Our 2022 meeting will feature talks by thought leaders on the latest in healthcare, therapy development, clinical trials, and firing up the FSHD community to take on the challenges of living well and pushing for…

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MS View and News’ Compass to MS Care Educational Luncheon

June 18 @ 10:40 am - 2:15 pm
4025 Wards Rd
Lynchburg, VA 24502 United States
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Compass to MS Care: Reaching Rural America & Beyond Educational Lunch Program June 18, 2022 Featuring Guest Speakers Megan Weigel, DNP, ARNP-C, MSCN, and Suzanne O'Connell, patient advocate Attend this program in order to: Understand more about MS Learn how to access the specialty care you may need to address life with MS, as well as access to care in your community Learn about emerging therapies Telehealth for MS Care Today Get tips for stress management, sleep, nutrition, neuroplasticity, and…

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MS Views and News’ Understanding the Ins and Outs of Insurance and Specialty Pharmacy- Shared Decision Making in MS Treatment Options Webinar

June 22 @ 7:00 pm - 8:30 pm

Understanding the Ins and Outs of Insurance and Specialty Pharmacy- Shared Decision Making in MS Treatment Options Webinar July 21, 2022 Join Dr. Gary Owens as he helps us understand more about insurance, authorizations, copays, biologics, biosimilars, and more! This important program was designed to help people living with MS navigate complex systems and make informed decisions while managing insurance, medications, and communication with your healthcare team. To sign up, click here.

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The MDS Foundation’s The MDS Widow: Sharing and Moving Forward Webinar

June 23 @ 5:30 pm - 7:00 pm

Webinar: The MDS Widow: Sharing and Moving Forward June 23, 2022 Rochelle Ostroff-Weinberg, widow of Robert Weinberg, invites you to join her and other MDS widows on International Widows’ Day.   To register, email Rochelle (rlkow813@gmail.com) by noon on the 23rd.

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The Aplastic Anemia and MDS International Foundation’s Aplastic Anemia, MDS, and PNH Virtual Support Group

June 25 @ 10:30 am - 11:30 am

The Aplastic Anemia, MDS, and PNH Virtual Support Group June 25, 2022 AAMDSIF is pleased to announce that we will host a support group for patients diagnosed with aplastic anemia, MDS and PNH. The group is hosted by AAMDSIF and will be monitored to ensure the privacy and safety of our participants. To register, click here.

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The MDS Foundation’s 2022 Webinars: Becoming a Partner in Your Care: MDS Support Group

June 25 @ 12:00 pm - 1:30 pm

Webinar: Becoming a Partner in Your Care: MDS Support Group June 25, 2022 with Sara M. Tinsley, PhD, APRN, AOCN, Moffitt Cancer Center, Tampa, FL Attend this webinar dedicated to myelodysplastic syndromes (MDS) patient support. Learn about self-care, the challenges faced by patients and caregivers, and how to become a partner in your own care. To register, click here.

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