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…
FSHD Society Radio May 11, 2021 On the second Tuesday of each month, Tim Hollenbeck hosts FSHD Society radio on YouTube. Dial in at 414-375-2561 to share your thoughts, or…
RARE on the Road 2021: Rare Disease Leadership Tour Virtual Training and Networking: Florida May 11, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since…
Transfusion Dependence and Transfusion Support in MDS May 8, 2021 Speaker: Lewis R. Silverman, MD; Icahn School of Medicine at Mount Sinai Join this webinar to learn a general overview of…
The month of May is recognized annually as CF (Cystic Fibrosis) Awareness Month, a time meant to help spread awareness about the genetic disorder among the medical community and the…
On April 28th, the virtual World Orphan Drug Congress USA 2021 was held. The program featured a variety of subjects relevant to the development of orphan drugs and the rare…
On April 28th, the virtual World Orphan Drug Congress USA 2021 was held. The program featured a variety of subjects relevant to the development of orphan drugs and the rare…
The month of May is being recognized as Lyme Disease Awareness Month, a time to spread awareness about this disease among the medical field and the general public. As spring…
RARE on the Road 2021: Rare Disease Leadership Tour Virtual Training and Networking: Nevada May 4, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since…
On April 28th, the virtual World Orphan Drug Congress USA 2021 was held. The program featured a variety of subjects relevant to the development of orphan drugs and the rare…
World Orphan Drug Congress USA 2021 Free Virtual Event Online April 28, 2021 The Global Orphan Drug Conference and Expo Don't miss out on this global event featuring over 1,000…
Online Support Group for Cystic Fibrosis Caregivers April 20, 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 April 19, 2021 CFRI provides a monthly Online Support Group for Adults with CF, which is open to participants nationwide. The group…
Clinical Implications of Genetic Mutations in Myelodysplastic Syndromes April 17, 2021 Speaker: Rami Komrokji, MD; Moffitt Cancer Center Join this webinar to learn the latest about the genetics of myelodysplastic syndromes.…
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…
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…
Champions to CureDuchenne Join us for a magical evening under the stars. The event features gourmet food, cocktails, casino games, and live and silent auctions for a night of fun…
The Usher 1F Collaborative has recently announced the opening of registration for its scientific conference titled "Therapeutic Strategies for Large Protein Coding Genes in Usher Syndrome." This event will be…
According to a story from Cushing's Disease News, the Cushing's Support and Research Foundation (CSRF) is organizing to support Cushing's Awareness Day, which takes place on April 8th. A day…
The Rare Sibling Experience March 25, 2021 Rare disease impacts extend beyond the patient themselves and can have a profound effect on families. Siblings of rare patients are placed in…
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…
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…
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