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February 2021

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

February 15 @ 6:00 pm - 7:30 pm

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 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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Angel Aid Cares’ Spiritual Self-Care Workshop with Padma Gordon

February 16 @ 10:00 am - 11:00 am

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 about the meaning of spirituality and the role that it plays in your life. Participants of all religious faiths and spiritual backgrounds are welcome. This is a recurring series held each Tuesday at 10 AM PST. Click here to sign up.

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The FH Foundation’s FH Global Summit: New Frontiers of FH Care

February 17 @ 12:00 pm - 1:30 pm

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 treat cardiovascular illness? Is it possible to look beyond the known genes associated with FH to determine a personal risk assessment? Click here to sign up.

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Cystic Fibrosis Research, Inc.’s California Rare Disease Advisory Council Virtual Coalition Meeting

February 17 @ 1:00 pm - 2:30 pm

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 mid-February.  If you would like to review the proposed bill language, please email Stacie Reveles at sreveles@cfri.org.  Our next coalition meeting will take place in conjunction with California’s Rare Action Network Rare Disease Day Virtual Event. Click here to sign up and learn more.

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Angel Aid Cares’ Journaling and Resilience Workshop

February 18 @ 11:00 am - 12:00 pm

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 joy. This workshop will be held every Thursday at 11 AM PST. Click here to sign up.

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Angel Aid Cares’ Spiritual Self-Care Workshop with Padma Gordon

February 23 @ 10:00 am - 11:00 am

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 about the meaning of spirituality and the role that it plays in your life. Participants of all religious faiths and spiritual backgrounds are welcome. This is a recurring series held each Tuesday at 10 AM PST. Click here to sign up.

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The Orphan Disease Center’s 10th Anniversary Celebration

February 24 - February 25

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. In addition, there will be a tribute to George A. Weiss, the founder of the center. The program will focus on the achievements in diagnosis, research, and treatment for rare diseases that the center has helped achieve. Click here to register. For more info about this event, click here.

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Intercept Pharmaceuticals’ Living with PBC: Learning Together

February 24

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 who understand your experience. Learn about PBC from a certified Nurse Educator.* Hear a Patient Ambassador* share their own story about getting diagnosed with PBC. Empower yourself with the resources and knowledge to take charge of your life with PBC. To register for this event, click here. *Patient Ambassador and…

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Angel Aid Cares’ Journaling and Resilience Workshop

February 25 @ 11:00 am - 12:00 pm

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 joy. This workshop will be held every Thursday at 11 AM PST. Click here to sign up.

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March 2021

National Institutes of Health’s Virtual Rare Disease Day

March 1 @ 10:30 am - 5:30 pm

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. The event also aims to inform the public about the ongoing research collaborations involving the NIH that are vital to improving the lives of patients. While this year's event will be hosted virtually due to the ongoing COVID-19 pandemic, it will still include the sharing of rare disease stories, interactive…

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Global Genes and the EveryLife Foundation’s Rare on the Road 2021: A Rare Disease Leadership Interactive Webinar

March 3 @ 11:00 am - 1:30 pm

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 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 this interactive webinar and three in-person events. The in-person events will be held in accordance with local laws…

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Angel Aid Cares’ Journaling and Resilience Workshop

March 4 @ 11:00 am - 12:00 pm

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 joy. This workshop will be held every Thursday at 11 AM PST. Click here to sign up.

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Mission: Cure’s Living with Pancreatitis: Navigating Your Diagnosis

March 10 @ 2:00 pm - 3:00 pm

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 out for, diagnostic tests, and patient tools that can help you feel prepared next time you visit your doctor. Interested in attending this event? Click here to get started.

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Angel Aid Cares’ Rare Mother Meetup

March 10 @ 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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Angel Aid Cares’ Journaling and Resilience Workshop

March 11 @ 11:00 am - 12:00 pm

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 joy. This workshop will be held every Thursday at 11 AM PST. Click here to sign up.

Find out more »

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

March 15 @ 6:00 pm - 7:30 pm

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 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

March 16 @ 5:00 pm - 6:00 pm

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 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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Burning Nights’ Online CRPS Support Group

March 17 @ 2:00 pm - 4:30 pm

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 monthly online support groups for those affected by this syndrome. These support groups are for caregivers, patients, and family members. Click here to sign up.

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Angel Aid Cares’ Journaling and Resilience Workshop

March 18 @ 11:00 am - 12:00 pm

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 joy. This workshop will be held every Thursday at 11 AM PST. Click here to sign up.

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Cystic Fibrosis Research, Inc.’s Virtual CF Winter-to-Spring Mini Retreat

March 19 - March 21

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 special guests and CF experts. New participants are encouraged to attend. Registration is required and limited to 100 participants. For any questions, please email retreat@cfri.org.  Click here to register.

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Angel Aid Cares’ Journaling and Resilience Workshop

March 25 @ 11:00 am - 12:00 pm

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 joy. This workshop will be held every Thursday at 11 AM PST. Click here to sign up.

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NORD’s The Rare Sibling Experience Webinar

March 25 @ 2:00 pm - 3:00 pm

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 an unusual position replete with its own challenges. This program will investigate the role of rare siblings with input from multiple experts on the subject including: Eden Van Alstine, MS, CCLS, Child Life Specialist, Children's Hospital of Philadelphia Kate McGowen, MEd, CCLS II, Child Life Specialist, Children's Hospital of Philadelphia…

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April 2021

CureDuchenne’s Champions to CureDuchenne Fundraiser

April 10
The University of Texas Golf Club, 2200 University Club
Dallas, TX 78732 United States
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$1000

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 and purpose! This fundraiser benefits CureDuchenne and allows them to invest in next generation gene therapy research technology to find a cure for this generation of boys and young men living with Duchenne muscular dystrophy. Through the generous support of the Austin Community, Champions to CureDuchenne has funded more than…

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Intercept Pharmaceuticals’ Living with PBC: Learning Together

April 14

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 who understand your experience. Learn about PBC from a certified Nurse Educator.* Hear a Patient Ambassador* share their own story about getting diagnosed with PBC. Empower yourself with the resources and knowledge to take charge of your life with PBC. To register for this event, click here. *Patient Ambassador and…

Find out more »

Angel Aid Cares’ Rare Mother Meetup

April 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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