Programs
Wellness Meetups
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This workshop will offer tools for how to have more loving relationships, how to navigate challenges, and how to work together as a team as a Rare Family. We will discuss the importance of tending to oneself within a relationship so that we can tend to others. There will be space for you to bring your questions, your challenges, and your triumphs. We will gather as a group to support one another in our families. Join us here!
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Join Pamela Russell on Thursdays at 10 am PST, for an empowering round table experience by building community through organic support with other women. Come as you are. No preparation is required to join.
We gather to hear from our community. As one mother put it, “We are Rare, but we are not alone.” This is an opportunity to share stories and see yourself reflected in others. Join us here!
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Come to listen, come to participate, come to connect - just come as you are! The conversation will center upon the needs, desires, and situations as unique as the group gathered. But, most important of all, is the benefits gained from collective wisdom, shared experience, and unconditional support. Join us here!
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This is a monthly event, hosted by Christopher Velona on the second Saturday of each month at 11 am PST.
Come to listen, participate and connect with other men in the rare disease community. Patients and caregivers are welcome. Join us here!
Hosted by Mighty Networks
Retreats
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We understand you. We know first hand how much you have given to your child or loved one. We know the toll being a caregiver to a patient with a rare disease can place on your mind and body. We know because we’ve been there too.
M.O.R.E. is an online wellness experience guided by professional wellness gurus, clinicians and self-care experts specializing in working with rare families. Gain experience, education and empowerment to reconnect you with the women you were before you became a Raregiver. Many of our mothers tell us they felt “invisible” before coming to the retreat and after they left empowered, excited and most of all connected to a community of women who truly listen without judgment.
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The journey into motherhood is one of the most significant transformations a woman makes in a lifetime. It is so complex and extraordinary that it touches every aspect of her life. When your precious child has a rare disease, this journey becomes even more complex with dramatic shifts in time, focus, lifestyle, finances and relationships.
Dr. Laura Riordan created this step by step program to help navigate the unique journey through rare motherhood and introduce participants to a community of Rare Mothers who understand exactly what it’s like ~ you are not alone.
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The Australia Virtual Caregiver Wellness Retreat is an online wellness experience guided by professional clinicians and self-care experts specializing in rare disease caregiving. Gain experience, education and empowerment to reconnect you with the person you were before epilepsy touched your life. Many of our participants tell us they feel “invisible” before coming to our retreat experience and they leave feeling empowered and excited.
We see you. We developed this Virtual Retreat to give you tools, experiences and healing within a supportive community of caregivers and your support network who understand you.
ANGEL AID is proud to offer our first international retreat in partnership with the Epilepsy Foundation of Australia. Our U.S. based organization has always been global and we are honored to bring our research-backed methodology to Australia in March, 2023. We have worked together with the University of New South Wales to put our retreat through an intense Independent Review Board to gain ethics approval for the first time and have an even better experience waiting for you.
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The Narcolepsy Caregiver Wellness Retreat is an online wellness experience guided by professional clinicians and self-care experts specializing in rare disease caregiving. Gain experience, education and empowerment to reconnect you with the person you were before narcolepsy touched your life. Many of our participants tell us they felt “invisible” before coming to the retreat and after they left empowered and excited.
We see you. We developed this Virtual Retreat to give you tools, experiences and healing within a supportive community of caregivers and your support network who understand you.
(Sponsored by Harmony Biosciences)
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We understand. We know first hand how much you have given (and lost) to this lived experience called ‘rare disease’. We know the toll being a caregiver to a loved one with a rare disease, or even a rare disease patient yourself, can place on your mind and body. ANGEL AID was founded by a rare family - the Barrett family - and we invite you to our healing retreat center to relax, laugh and reflect with other men who ‘get it’.
The Raregivers™ Men’s Retreat is an experience guided by professional wellness gurus, practitioners and self-care experts specializing in working with rare families. You will gain experience, education and empowerment to reconnect your psyche and your heart with the man you were before rare disease threw a detour into your life ~ and the tools and techniques to sustain your well-being back home. Many of our participants tell us they felt “invisible” before coming to the retreat and after they left empowered, excited and most of all connected to a community who will truly listen without judgement.
Programs
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(Melissa Hogan) It is our intent to offer education and techniques for patients and caregivers to manage medical trauma and anxiety throughout the journey as a rare caregiver.
Together we will learn about:
Medical anxiety and trauma and how to recognize it.
Your identity as a caregiver and how that plays into dealing with medical anxiety and trauma.
Preventing and reducing medical anxiety and trauma.
Strategies for preventing and reducing medical anxiety and trauma in your child.
Come and join us with a pen and notebook in hand as we explore how medical experiences can affect you, and how to prevent and manage medical anxiety and trauma to the benefit of yourself and your child.
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It is our intent to offer education and techniques for patients and caregivers to manage stress during needle-poke procedures. Each step in this plan is backed by evidence-based research, but these are recommendations only and may need to be modified to work best for you or your child’s specific medical situation. This is not medical advice and all steps you take should be reviewed with your medical provider to ensure they are appropriate and safe for you and/or your child.
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ANGEL AID is hosting a small group workshop free for patients and caregivers living with a Rare Disease. Selected participants will learn the art of animation, character design, settings and storytelling from professionals and artists-in-training at CreativeCave.
All supplies PLUS a Mighty bracelet and an ANGEL AID stainless steel water bottle will be shipped directly to participants’ home for free.
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Individuals involved with rare, complex and chronic diseases including patients, caregivers, families, friends, doctors, medical staff, clinical researchers, payers, patient organizations, biopharmaceutical employees, academics, advocates and all others in the community giving their talents, time and life-force to further and honor medicalized lives.
Mental health is as important as physical health for rare caregivers, patients and professionals…Raregivers™.
(Sponsored/partnered Ionis, SCN2A, Indousrare, The Assistance Fund, Horizon, Microsoft, Sanofi, Biocryst)
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The experiences of rare caregivers are largely hidden, especially in the Alexander Disease community. They often feel as if their story is overlooked or misunderstood. ANGEL AID is honored to provide an opportunity to build community with those who can relate. ‘Voice of the Raregivers™’ provided participants with a space to explore with others what it truly means to be the parent/caregiver of a child with Alexander Disease.
Dr. Chelsey Hague and participants were able to explore topics ranging from the diagnostic journey to caregiving, identity shifts and navigating the medical system, and identity shifts related to their child’s diagnosis.
Each workshop included live virtual group discussions after which a skilled illustrator created six graphics relating to participant experiences in parenting a child with a rare disease. These graphics focus on the context of what it is like to experience stress, uncertainty, anxiety, and fear while navigating the child’s rare disease. These insights will bring a ‘voice’ to these important topics and support future families, medical professionals, and others in the rare disease community to better understand the experience of parenting/caregiving for a child with Alexander Disease and to better meet the needs of families.
These discussions were informed by the Emotional Journey Map, spearheaded by ANGEL AID in 2022, illustrating the cycle of hope and grief ~ six (6) well-documented stages that rare caregivers, patients and professionals may experience.
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The experiences of Rare Carriers are largely hidden. Many Rare Carriers feel their stories are overlooked. They describe not being able to see their stories and experiences in other families. Rare Carriers have many questions and fears about the future, but are often unsure where to look for support.
To raise awareness of the Rare Carrier experience ANGEL AID gathered 24 Carriers from around the world to shed light on their unique challenges.
ANGEL AID Health & Wellness Practitioner, Dr. Chelsey Hauge, guided participants through a series of thoughtful prompts that focused on topics such as grief, relationships, fertility, genetic testing, identity, and more. We captured these conversations in six shareable infographics ~ graphic testimonies of the emotions, concerns, and triumphs of Rare Carriers.
Each workshop included a live, virtual group discussion that was then graphically represented by our facilitator, Dr. Chelsey Hauge-Zavaleta. Between workshops, participants responded to a series of additional prompts via our vlogging platform, Moodify. The Rare Carriers were encouraged to share their moods and emotions via Moodify, as well as support others in the community with video responses, and they did so beautifully.
These insights encompass the ‘Voice of the Rare Carrier.’