Virtual CF Winter-to-Spring Mini Retreat March 19-21, 2021 This event will take place fully online and will feature daily exercises, arts and crafts, support group sessions, and education presentations from…
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and…
Join Burning Nights CRPS Support for our next online complex regional pain syndrome (CRPS) support group on Wednesday, March 17, 2021. Burning Nights CRPS Support are still continuing to provide…
Online Support Group for Cystic Fibrosis Caregivers March 16, 2021 CFRI provides a monthly CF Caregivers Online Support Group, which is open to participants nationwide. The group is facilitated by…
Online Support Group for Adults with Cystic Fibrosis March 15, 2021 CFRI provides a monthly Online Support Group for Adults with CF, which is open to participants nationwide. The group…
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and…
Suddenly Sleepy Saturday, a day dedicated to spreading awareness about narcolepsy, is being held on March 13, 2021. The Narcolepsy Network is looking for volunteers to send a proclamation request…
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…
March is recognized as Myeloma Action Month, a time dedicated to spreading awareness among the general public and the medical community about multiple myeloma, a rare hematological cancer. This event…
Living with Pancreatitis: Navigating Your Diagnosis March 10, 2021 The webinar will feature Dr. Eli Penn, who will discuss several subjects related to pancreatitis diagnosis, such as symptoms to look…
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and…
RARE on the Road 2021: Rare Disease Leadership Tour A Rare Disease Leadership Interactive Webinar March 23, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together…
Rare Disease Day at NIH March 1, 2021 Rare Disease Day is held every year to help raise awareness surrounding rare diseases and the people that are impacted by them.…
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and…
10 Year Anniversary Celebration of The Orphan Disease Center at the University of Pennsylvania February 24-25, 2021 This virtual, two day long event will feature speakers in science and medicine.…
Living with PBC: Learning Together PBC may be a rare disease, but you don't need to face it on your own. Sign up for this educational program and meet others…
Spiritual Self-Care Workshop Join embodied mindfulness Counselor Padma Gordon for a morning filled with discussion and meditation. The workshop includes a warmup grounding meditation followed by journaling and a conversation…
The last day in the month of February is recognized each year around the world as Rare Disease Day. The day serves primarily as a moment of spreading awareness about…
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and…
California Rare Disease Advisory Council Virtual Coalition Meeting February 17, 2021 Legislation to create a California Rare Disease Advisory Council (RDAC) will be introduced by State Senator Susan Eggman in…
The FH Global Summit Session 5: New Frontiers of FH Care February 17, 2021 This session will focus on the future of FH care. Can CRISPR gene editing technology help…
Spiritual Self-Care Workshop Join embodied mindfulness Counselor Padma Gordon for a morning filled with discussion and meditation. The workshop includes a warmup grounding meditation followed by journaling and a conversation…
Online Support Group for Adults with Cystic Fibrosis February 15, 2021 CFRI provides a monthly Online Support Group for Adults with CF, which is open to participants nationwide. The group…
February 15th is recognized annually as International Angelman Day, a day dedicated around the world to spreading awareness among the general public and in the medical field about Angelman syndrome,…
Oley Tube Feeding/TPN Virtual Support Group for Patients & Caregivers February 11, 2021 Don't miss this support group for parents and caregivers that rely on tube feeding and intravenous…
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