- Rare Disease News
- contribute@patientworthy.com
Events Search and Views Navigation
May 2021
Global Genes and the EveryLife Foundation’s Rare on the Road 2021: Virtual Training and Networking
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 2017 on the RARE on the Road project, serving to develop new leaders in rare disease advocacy and hosting events around the country. At this time the 2021 tour will include an interactive webinar and three virtual, state-specific events. Registration opens in February 2021. For more info, click here.
Find out more »The FSHD Society’s FSHD Society Radio
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 you can always leave a comment or question. This month's event will feature Lori Brant, an FSHD patient who works as a life coach. Lori will talk about a method she developed called The Alignment Strategy. To learn more about Lori, click here. Click here to sign up for this…
Find out more »Angel Aid Cares’ Rare Mother Meetup
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 is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.
Find out more »Usher 1F Collaborative’s Virtual International Scientific Research Conference
The Virtual International Scientific Research Conference May 13-14, 2021 "Therapeutic Strategies for Large Protein Coding Genes in Usher Syndrome" This meeting will serve as a convergence of scientists and investigators who are involved in Usher syndrome research. Although the focus of this event will primarily be research, any Usher syndrome families are encouraged to attend, and registration is free of charge. Click here to sign up.
Find out more »Cystic Fibrosis Research, Inc.’s Online Support Group for Adults with Cystic Fibrosis
Online Support Group for Adults with Cystic Fibrosis May 17, 2021 CFRI provides a monthly Online Support Group for Adults with CF, which is open to participants nationwide. The group is facilitated by a social worker well versed in issues facing adults with CF. The group meets on the third Monday of every month, from 6-7:30 pm (9-10:30 pm EST). To participate, please send an email to CFRI to request the registration link. Please allow 3-4 hours before the meeting to register. …
Find out more »Global Genes and the EveryLife Foundation’s Rare on the Road 2021: Virtual Training and Networking
RARE on the Road 2021: Rare Disease Leadership Tour Virtual Training and Networking: Illinois May 18, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since 2017 on the RARE on the Road project, serving to develop new leaders in rare disease advocacy and hosting events around the country. At this time the 2021 tour will include an interactive webinar and three virtual, state-specific events. Registration opens in February 2021. For more info, click here.
Find out more »Cystic Fibrosis Research, Inc.’s Online Support Group for Cystic Fibrosis Caregivers
Online Support Group for Cystic Fibrosis Caregivers May 18, 2021 CFRI provides a monthly CF Caregivers Online Support Group, which is open to participants nationwide. The group is facilitated by a social worker well versed in issues facing caregivers working with CF patients. The group meets on the third Tuesday of every month: One session is held for parents of CF patients, from 5-6 pm PT; and another is for partners/spouses/parents of adult patients, which is held from 7-8 pm…
Find out more »The FSHD Society’s FSHD University Webinar
FSHD University: The Job Talk w/ Lynn Stevens May 20, 2021 Many people with FSHD have given up when it comes to work. They often believe they are unemployable and should seek disability benefits instead. Lynn Stevens, Director of Workforce Development at Goodwill Industries of North Louisiana, has a different message. Tune in to this webinar to learn about what it takes to have a successful career while living with FSHD and the resources that are available. Click here to…
Find out more »June 2021
The MDS Foundation’s Becoming a Partner in Your Care: MDS Support Group Webinar
Becoming a Partner in Your Care: MDS Support Group June 5, 2021 Speaker: Sandra Kurtin, PhD, ANP-C, AOCN; The University of Arizona Cancer Center This free webinar is geared to supporting patients and loved ones. Listen in to learn how to become a partner in your care. Learn more about self-care and the emotional, physical, and social challenges faced by caregivers and MDS patients. Connect with your community, learn, hear ideas, and have your questions answered. To register, click here.
Find out more »Angel Aid Cares’ Rare Mother Meetup
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 is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.
Find out more »July 2021
The GRIN2B Foundation’s 2021 GRIN2B Family Weekend
$85
2021 GRIN2B Family Weekend July 9-10, 2021 This event is open to patients and families affected by GRIN2b-related neurodevelopmental disorder and related diseases. The weekend will be focused on building community, education, and providing families with critical support and resources. For registration and travel info, click here.
Find out more »Angel Aid Cares’ Rare Mother Meetup
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 is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.
Find out more »Cystinosis Research Network’s 2021 Summer Online Conference
The 2021 CRN Summer Online Conference "The Beat Goes On" July 15-19, 2021 While this event was originally slated to take place in person in Nashville, TN, in light of the ongoing COVID-19 pandemic, the conference will now occur online. This is in the interest of the safety and health of the cystinosis community. Don't miss the event as it is a vital opportunity for education, community support, and fun. For more information about this event, click here.
Find out more »The MDS Foundation’s Webcast de MDS en Español
Que son los sindromes mielodisplasicos? Guillermo Montalbán Bravo, MD, MD Anderson Cancer Center Este seminario les va a proveer como se determina el diagnóstico de MDS, se estará enfocando en los subtipos y la manifestación de MDS. Comprendiendo el diagnostico de MDS y los detalles de los diferentes tratamientos, y las respuestas a las preguntas más comunes serán desarrolladas. Avances en el tratamiento de los sindromes mielodisplasicos. Guillermo Garcia-Manero, MD, MD Anderson Cancer Center Además, estaremos proveyendo los tratamientos y…
Find out more »August 2021
The MDS Foundation’s Outcomes for High-Risk MDS Patients Undergoing Transplant vs. Standard Non-Transplant Therapies Webinar
Outcomes for High-Risk MDS Patients Undergoing Transplant vs. Standard Non-Transplant Therapies August 7, 2021 Speaker: Erica D. Warlick, MD, University of Minnesota Medical Center This free webinar provides an overview of allogeneic hematopoietic cell transplant as a treatment for high-risk MDS. This approach will be compared with other common treatment approaches, such as hypomethylating agents and other novel agents. To register, click here.
Find out more »Angel Aid Cares’ Rare Mother Meetup
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 is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.
Find out more »September 2021
Angel Aid Cares’ Rare Mother Meetup
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 is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.
Find out more »October 2021
Angel Aid Cares’ Rare Mother Meetup
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 is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.
Find out more »The MDS Foundation’s CAR T Cell Therapy in MDS/AML Webinar
CAR T Cell Therapy in MDS/AML October 16, 2021 Speaker: David A. Sallman, MD, Moffitt Cancer Center This informational webinar will focus on a treatment approach called CAR T-cell therapy, a procedure in which the patient's own T-cells are extracted and modified in order to attack cancer. Learn about the latest advances in this form of treatment and the implications for people living with AML and MDS. To register, click here.
Find out more »November 2021
Angel Aid Cares’ Rare Mother Meetup
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 is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.
Find out more »December 2021
Angel Aid Cares’ Rare Mother Meetup
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 is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.
Find out more »January 2022
Angel Aid Cares’ Rare Mother Meetup
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 is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.
Find out more »February 2022
Angel Aid Cares’ Rare Mother Meetup
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 is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.
Find out more »June 2022
HCU Network America, Organic Acidemia Association, and Propionic Acidemia Foundation’s 2021 Conference
HCU Network America, Organic Acidemia Association, and Propionic Acidemia Foundation's "LAND OF THE FREE, HOME OF THE BRAVE" 2021 Conference June 2022 The Land of the Free, Home of the Brave, 2021 Conference will serve as a chance for patients, patient families, caregivers, and medical professionals to converge and learn about the latest research related to acidemia and homocystinuria, as well as the newest advancements in treatment. Attendees will have the opportunity to support one another and help build community.…
Find out more »
