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April 2021

The MDS Foundation’s Clinical Implications of Genetic Mutations in Myelodysplastic Syndromes Webinar

April 17 @ 12:00 pm - 1:00 pm

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. Hear about the role of mutational data in the clinical management of the condition, with implications for treatment, diagnosis, and risk stratification. To register, click here.

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Cystic Fibrosis Research, Inc.’s Online Support Group for Adults with Cystic Fibrosis

April 19 @ 6:00 pm - 7:30 pm

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 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. …

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Cystic Fibrosis Research, Inc.’s Online Support Group for Cystic Fibrosis Caregivers

April 20 @ 5:00 pm - 6:00 pm

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 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…

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Terrapinn’s World Orphan Drug Congress USA 2021 Virtual Event

April 28 @ 9:00 am - 5:00 pm

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 rare disease stakeholders from around the world. This online event will feature over 50 speakers that will discuss a variety of relevant topics, such as advocacy, rare disease clinical development, and the latest, most advanced therapies. Get involved and join the conversation about new developments and ideas through exclusive, informative…

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May 2021

Global Genes and the EveryLife Foundation’s Rare on the Road 2021: Virtual Training and Networking

May 4

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 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 state-specific virtual events. Registration opens in February 2021. For more info, click here.

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The MDS Foundation’s Transfusion Dependence and Transfusion Support in MDS Webinar

May 8 @ 12:00 pm - 1:00 pm

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 transfusion dependence in patients living with MDS. Learn about the risks and benefits of blood transfusion. Gain a full understanding of transfusion dependence and have your most pressing questions answered. To register, click here.

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Global Genes and the EveryLife Foundation’s Rare on the Road 2021: Virtual Training and Networking

May 11

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.

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The FSHD Society’s FSHD Society Radio

May 11 @ 8:00 pm - 9:00 pm

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…

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Angel Aid Cares’ Rare Mother Meetup

May 12 @ 6:00 pm - 7:00 pm

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.

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Usher 1F Collaborative’s Virtual International Scientific Research Conference

May 13 - May 14

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.

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Cystic Fibrosis Research, Inc.’s Online Support Group for Adults with Cystic Fibrosis

May 17 @ 6:00 pm - 7:30 pm

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. …

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Global Genes and the EveryLife Foundation’s Rare on the Road 2021: Virtual Training and Networking

May 18

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.

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Cystic Fibrosis Research, Inc.’s Online Support Group for Cystic Fibrosis Caregivers

May 18 @ 5:00 pm - 6:00 pm

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…

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The FSHD Society’s FSHD University Webinar

May 20 @ 12:00 pm - 1:00 pm

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…

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June 2021

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

June 5 @ 12:00 pm - 1:00 pm

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.

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Angel Aid Cares’ Rare Mother Meetup

June 9 @ 6:00 pm - 7:00 pm

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.

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The Immune Deficiency Foundation’s National Primary Immunodeficiency Conference

June 23 - June 26

The Primary Immunodeficiency Conference June 23-26, 2021 This conference is the largest primary immunodeficiency (PI) patient gathering on Earth. Patients, clinicians, and caregivers will come together for this virtual event dedicated to community, education, and awareness surrounding primary immunodeficiency. For more info on this event, click here. To register for the conference, click here.

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National Organization for Rare Disorders’ Living Rare, Living Stronger Patient and Family Forum

June 26 - June 28
$39

The 2021 Living Rare, Living Stronger Patient and Family Interactive Virtual Forum Featuring the Rare Impact Awards June 26-28, 2021 This forum is specifically geared to be a patient-centric event. As always, this forum is meant to be a space for the rare disease community to converge for inspiration, education, networking, fun, and hope. The agenda includes sessions in which patients and their families can gain insight and practical tools for living their best lives with rare diseases, with workshops…

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The TAPS Support Foundation’s Twin Talks Webinars: Twin Anemia Polycythemia Sequence 101

June 29 @ 10:00 am - 11:00 am

Twin Talks Webinars: Twin Anemia Polycythemia Sequence 101 June 29, 2021 This webinar will be focused on answering any questions that the audience wants to know about twin anemia polycythemia sequence (TAPS). 07:00 am PDT, 9:00 am CDT, 10:00 am EDT, 3:00 pm BST 4:00pm CEST 12:00am AEST Moderator: Stephanie Ernst, TAPS Support Foundation Patient Special Guest: Bethany Beck, TAPS parent from Ohio Featured Speakers: Prof. Enrico Lopriore, Dr. Femke Slaghekke, Dr. Lisanne Tollenaar, Dr. Joanne Verweij & Dr. Jeanine van…

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July 2021

Cambridge Rare Disease Network’s RAREsummit21

July 2
£25

RAREsummit21 October 7, 2021 CRDN's RAREsummit21 is designed as a platform for change. This is an opportunity to hear from and engage with the stakeholders that are creating change across the rare disease landscape. Goals of the virtual event include: Raising awareness of rare diseases and their impacts Show examples of patient group collaboration with other stakeholders. Bring rare disease stakeholders together to drive new partnership opportunities. Equip stakeholders with the knowledge and skill to incorporate patients and patient advocates…

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The GRIN2B Foundation’s 2021 GRIN2B Family Weekend

July 9 - July 10
Hyatt Regency O’Hare, 9300 W Bryn Mawr Ave
Rosemont, IL 60018 United States
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$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.

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Angel Aid Cares’ Rare Mother Meetup

July 14 @ 6:00 pm - 7:00 pm

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.

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Cystinosis Research Network’s 2021 Summer Online Conference

July 15 - July 19

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.

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Alagille Syndrome Alliance’s 9th International Symposium

July 16 - July 17

The 9th International Symposium on Alagille Syndrome "The Alagille Trail" July 16-17, 2021 The Alagille Syndrome Alliance is Discovering New Paths and Leaving No Stone Unturned at their 9th annual symposium in 2021. This year's event will be fully virtual in light of the ongoing COVID-19 pandemic. This year's event is presented by Mirum Pharmaceuticals and Albireo Pharma and is sponsored by Travere Therapeutics. The virtual platform will feature interactive booths and virtual lounges that will allow participants to connect…

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The MDS Foundation’s Webcast de MDS en Español

July 17 @ 12:00 pm - 1:00 pm

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…

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