Classical HCU Parent-Caregiver Online Meetup March 19, 2022 at 10 AM Online meet-ups are an opportunity to connect parents & caregivers impacted by classical homocystinuria to with each other. Whether…
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…
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,…
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, March 10, 2022,…
The SynGAP Research Fund: SYNGAP1 Service Dogs March 10, 2022 Speakers: Cecilia Anastos, SYNGAP1 Service Dog Trainer, and Virginie McNamar Meet Cecilia Anastos and learn about the service dogs she's…
February 28, 2022 is celebrated annually as Rare Disease Day. This is a major event for the rare disease patient community that helps spread awareness and shine a light on…
The SynGAP Research Fund: The Use of Milk Exosomes to Increase the Expression of SYNGAP1 Expression in SYNGAP1 Mice March 3, 2022 Speakers: Janos Zempleni, PhD from University of Nebraska…
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…
Rare Disease Day at NIH Virtual Conference February 28, 2022 Rare Disease Day® takes place worldwide, typically on or near the last day of February each year, to raise awareness among…
The Future of Chronic Pancreatitis Therapies Meet two leaders at the forefront of new developments February 23, 2022 2:00 PM Join us in conversation with industry leaders who are developing…
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…
Webinar: Optimizing Transfusion Support in MDS February 12, 2022 with Lindsay R. Wilde, MD, Sidney Kimmel Cancer Center and Thomas Jefferson University Hospital, Philadelphia, PA Attend this webinar to learn…
Rare Disease Week 2022 is taking place this year on February 22nd to March 2nd. Though normally held in Washington, DC, the EveryLife Foundation for Rare Diseases, which organizes the…
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,…
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, February 10, 2022,…
An Introduction to Autism BrainNet Webinar February 10, 2022 Speakers: David Amaral & Carolyn Komich Hare from Autism BrainNet To register, click here.
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
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…
Webinar: Focus on Understanding Clinical Trials and How to Identify the Right One for You January 22, 2022 with Andrew M. Brunner, MD, Massachusetts General Hospital, Assistant Professor of Medicine,…
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, January 20, 2022 6:30-7:30…
AVAIYA University: Conquering Chronic Pain. January 19-26, 2021 This online healing event is brought to you by iKE ALLEN & Ande Anderson, Co-Founders of AVAIYA University (creators & teachers of…
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,…
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, January 13, 2022,…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
3rd Annual Holiday Brunch and Gift Spectacular December 11, 2021 Along with the JET Foundation, Dreamsickle Kids will be hosting their 3rd Annual Holiday Brunch and Gift Spectacular providing a…
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