Bästa Us Hereditary Angioedema Association podcaster (2024)

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#BeyondHAE BONUS Episode: Empowering Youth Voices: Ally & Luke's Journey in Legislative Advocacy 17:50

1M ago17:50

17:50

In this special Youth Advocacy Month episode, join host Kobe as they sit down with HAEA Youth Advocacy Network Regional Leaders, Ally and Luke, to discuss their impactful experiences as young advocates during HAEA's Capitol Hill Day and advocacy training workshops. Ally and Luke share what it’s like to participate in legislative visits, why it’s cr…

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#BeyondHAE: A Day in the Life of Zach 16:09

2M ago16:09

16:09

In this episode of the #BeyondHAE podcast, hosted by Youth Leadership Council Member Noah, Zach shares his journey with HAE, which began when he attended his first HAEA event at the young age of 9. Thirteen years later, Zach has built lifelong friendships and developed essential advocacy skills that have shaped who he is today. Known by many for hi…

1
#BeyondHAE Podcast: A Day in the Life of Sanyu 28:53

4M ago28:53

28:53

Check out the latest #BeyondHAE podcast episode hosted by Kobe, featuring special guest Sanyu! Diagnosed with HAE as a child, Sanyu shares the challenges she faced growing up with the condition, her experience participating in a clinical trial, and how she now manages her life as a young adult on preventative medication. This youth produced podcast…

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#BeyondHAE Podcast: A Day in the Life of Caregiver Kailani 23:51

6M ago23:51

23:51

Join us in the latest episode of the #BeyondHAE podcast, where Noah, an HAEA Youth Leader, engages in a heartfelt conversation with Kailani, a dedicated caregiver to her mother living with Hereditary Angioedema (HAE). In this edition of the Day in the Life interview series, Kailani openly shares the unique challenges and victories experienced by yo…

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#BeyondHAE Podcast: A Day in the Life of Caroline 15:11

8M ago15:11

15:11

Dive into the latest episode of the #BeyondHAE podcast as we continue our Day in the Life interview series, featuring our special guest, 14-year-old Caroline. Diagnosed with HAE as a young child, Caroline shares her journey of managing HAE, discussing how she navigates attacks, administers medication, and handles situations as they arise, all while…

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#BeyondHAE Podcast: A Day in the Life of Bryn 27:12

10M ago27:12

27:12

We are thrilled to introduce a fresh new interview series on the #BeyondHAE podcast! Our "Day in the Life" episodes will delve into the experiences of young individuals with HAE, spanning from diagnosis to treatment management and their everyday routines. In this episode, we shine the spotlight on Bryn who was diagnosed at 16. HAEA Youth Leader Kob…

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Sponsored by BioCryst: HAE, the holidays and you. Navigating the holiday season with HAE 7:22

11M ago7:22

7:22

Senior Nurse Advocate with over 20 years of experience working with HAE patients will discuss tips and recommendations for successfully navigating the busy holiday season with HAE For more information about Hereditary Angioedema please visit ⁠HAEA.org ⁠ This episode is brought to you by our sponsor: ⁠BioCryst Pharmaceuticals, Inc.…

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#BeyondHAE Digging Deeper Interview Series: The Parent Perspective (Nikia) 25:23

1y ago25:23

25:23

This month's #BeyondHAE Digging Deeper Interview Series features HAEA Youth Leadership Council Member Sophia who interviews Kia who is both diagnosed with HAE but who is also a caregiver to her son Noah. This episode focuses on Kia's expereinces as a parent caring for her son Noah. This youth produced podcast is brought to you thanks to the support…

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#BeyondHAE Digging Deeper Interview Series: Overcoming Barriers to Pursue A Passion for Filmmaking (Natalie) 38:21

1y ago38:21

38:21

This month's BeyondHAE Digging Deeper Interview Series features HAEA Youth Leadership Council member Noah who interviews Natalie, a award winning filmmaker who has HAE. In this episode, Natalie talks about what it was like for her growing up with HAE, and how she pushed beyond her diagnosis to achieve her goal of becoming a filmmaker and starting a…

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#BeyondHAE Digging Deeper Interview Series: Studying Abroad with HAE (Nathan) 18:21

1+ y ago18:21

18:21

The #BeyondHAE Digging Deeper Interview series continues this month with our guest, Nathan who chats with HAEA Youth Leadership Council Member Noah about what it's been like for him growing up with HAE. Nathan joined us from his study abroad program in Switzerland where he is attending college. Nathan discusses what it's been like studying abroad w…

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#BeyondHAE Digging Deeper Interview Series: My caregiver journey (Eliana) 25:14

1+ y ago25:14

25:14

The #BeyondHAE Digging Deeper Interview series continues this month with our guest, HAEA Youth Caregiver Eliana who has grown up supporting her older sister who has an HAE diagnosis. Eliana talked with Youth Leadership Council member Kobe about the personal challenges that she encountered as her older sister was searching for a diagnosis. It's not …

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#BeyondHAE Digging Deeper Interview Series: I am a young adult with HAE (Mariel) 26:22

1+ y ago26:22

26:22

Continuing with the #BeyondHAE Digging Deeper Interview Series, this month's episode is hosted by Youth Leadership Council member, Kobe who interviews Mariel, a young woman with HAE who talks about growing up with unexplained symptoms and her journey to finally getting a diagnosis in her 20s. She talks about how she has adjusted her outlook on life…

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#BeyondHAE Digging Deeper Interview Series: My brother has HAE (Avery) 14:14

2y ago14:14

14:14

We kick off the year with a new series of the #BeyondHAE podcast called "Digging Deeper". Each episode in the series will feature an interview from either someone diagnosed with HAE or someone whose loved one is diagnosed as we dig deeper into their experiences with HAE. This episode is hosted by HAEA Youth Leadership Council member Sophia who inte…

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#BeyondHAE: HAEA Round Table: Young Adults (Kayla, Jack, and Morgan) 39:15

2y ago39:15

39:15

As we wrap up the year, we are thrilled to welcome three young adults with HAE to share their experiences living with a rare chronic condition. This episode was recorded as part of the HAEA Round Tables and covers topics ranging from overcoming challenges at school, coping with HAE through puberty, dating and relationships, and more. Listen now to …

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#BeyondHAE: My HAE Diagnosis and Management Journey (Ally) 7:57

2y ago7:57

7:57

Ally is our host for this month's episode of the #BeyondHAE Podcast series. Ally goes into detail as she talks about the ups and downs of her personal HAE journey and how she navigated through school while managing her condition. She talks about how getting involved in the HAEA youth community and advocating for the condition has impacted her life …

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#BeyondHAE: Commemorating HAE Youth Advocacy Month with a talk about advocacy and awareness 13:52

2y ago13:52

13:52

This month's episode is all about advocacy and awareness as we head into October and kick off HAE Youth Advocacy Month. We hear from three HAEA Social Media interns, Ally, Gabby, and Morgan who talk about how their desire to learn about advocacy and raise awareness about HAE resulted in building lifelong bonds with a community of people who underst…

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#BeyondHAE: Preparing for Back to School (Lisa & Hannah) 9:48

2y ago9:48

9:48

Back to school season is an important time for all kids, but for kids with Hereditary Angioedema, this time of the year also means educating new teachers about HAE, creating an emergency plan incase an attack happens at school, and managing stress that comes with a new schedule and new expectations. In this episode, we review the collection of usef…

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#BeyondHAE: I Use Social Media to Advocate for HAE (Maddie) 3:58

2+ y ago3:58

3:58

This month's episode is hosted by Maddie who talks about how she uses social media to raise awareness and advocate for HAE. She also provides some tricks and tips for others looking to advocate on social media. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organizati…

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#BeyondHAE: HAEA Round Table: Anxiety, Stress, and Growth with HAE 25:11

2+ y ago25:11

25:11

This month's episode of the #BeyondHAE podcast features two young people with HAE between the ages of 12 and 15 who talk about anxiety, stress, and growth with HAE. This Round Table featured topics like how to talk about your HAE with others, how it feels to have an HAE diagnosis, how to tell when an attack is coming on, and how to manage fear of n…

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#BeyondHAE: Managing my HAE in Middle School (Paige) 5:45

2+ y ago5:45

5:45

Episode 39 welcomes youth host Paige, who talks about how she copes with her attacks and her experience with attacks while in middle school. She talks about how she has overcome embarrassment and interviews a couple friends who talk about how they support Paige when she swells. Paige wraps up her episode with some advice to others who are not comfo…

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#BeyondHAE: HAEA Round Table: How Does It Feel to Be a Kid with HAE? 20:12

2+ y ago20:12

20:12

This month's episode of the #BeyondHAE podcast features four young people with HAE between the ages of 7 and 11 who talk about what it's like to have HAE. These young individuals discussed relevant topics such as what it’s like for them to grow up with HAE, the fear of needles, discussing their HAE diagnosis with teachers and friends, and more! Thi…

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#BeyondHAE: An Interview with Lisa Facciolla (Sydney & Lisa) 8:14

2+ y ago8:14

8:14

This month's episode of the #BeyondHAE Youth Podcast features HAEA Youth Advocate Sydney, who interviews HAEA Engagement Specialist, Lisa Facciolla who talks about her life with HAE, challenges that she overcame, and how she found independence through self-administration. This youth produced podcast is brought to you thanks to the support of the He…

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#BeyondHAE: Learning to feel comfortable with my condition (Zanya) 9:04

2+ y ago9:04

9:04

Episode 36 is hosted by Zanya who talks about her diagnosis journey and some of the challenges she encountered along the way. She talks about how getting involved in HAE advocacy and awareness has helped her come out of her skin and feel more comfortable sharing her diagnosis with people in her life. This youth produced podcast is brought to you th…

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#BeyondHAE: HAE and Dating (Kelsey and Matt) 8:49

3y ago8:49

8:49

In this episode of the #BeyondHAE podcast, Kelsie talks about how she approached introducing her diagnosis to her partner Matt who joins in as a guest host. She talks about the ways that he supports her in her diagnosis and he talks about what it means to him to support his partner. This youth produced podcast is brought to you thanks to the suppor…

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#BeyondHAE: The first in my family with HAE (Kira) 6:43

3y ago6:43

6:43

In this month's episode of the #BeyondHAE podcast, Kira talks about diagnosis journey as the first person in her family to be diagnosed with HAE. She talks about growing up with the condition and eventually the hurdles that she overcame to move away from home to attend college. This youth produced podcast is brought to you thanks to the support of …

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#BeyondHAE: Finding Comfort in Community (Jess and Hannah) 19:15

3y ago19:15

19:15

In this month’s episode of the #BeyondHAE Youth Podcast, we invite you to listen to Jess and Hannah’s story. They describe how meeting someone else their age with HAE changed their outlook on life and helped them to feel validated in their struggles with the rare chronic illness. This youth produced podcast is brought to you thanks to the support o…

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#BeyondHAE: How Advocacy and Awareness Has Impacted My Life (Emma) 4:47

3y ago4:47

4:47

In episode 33, Emma shares her personal HAE journey and talks about how getting involved in the HAEA community has helped her better cope with her diagnosis. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver…

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#BeyondHAE: Moving Away for College (Kobe) 8:37

3y ago8:37

8:37

Moving away from home to go to college can be a big adjustment for everyone, however, it can be a particularly big move for someone with HAE. Tune in to this month's #BeyondHAE podcast to hear how Kobe adjusted to college life away from home. Part of his new responsibilities involved receiving, managing, and taking his medication while at college. …

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#BeyondHAE: Never Give Up (Karissa) 8:43

3y ago8:43

8:43

This month's episode of the #BeyondHAE podcast is hosted by Karissa who shares her personal HAE story of perseverance and hope. Karissa experienced years of mis-diagnosis and had moments when her hope for a better future was dissipating, but Karissa never gave up. She pushed forward, and today continues to reach her goals and pursue her dreams. Thi…

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#BeyondHAE: Living #BeyondHAE with the HAEi Youngsters (Nanna, Erini, Isabel, and Nevena) 19:49

3y ago19:49

19:49

We are excited to welcome members from the HAE International Youngsters community as the hosts for this episode. Nanna, Erini, Isabel, and Nevena represent countries from all corners of the world as they talk about what it means to them to live #BeyondHAE. As you listen to this episode we ask that you reflect on your own story and what it means to …

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#BeyondHAE: How I Support Team Jack (Ally) 3:39

3+ y ago3:39

3:39

Episode 29 is hosted by Ally whose younger brother, Jack has HAE. In this episode, Ally talks about how her and her family support Jack and his HAE by coming together to host fun events and activities. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization servin…

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#BeyondHAE: We are Caregivers (Ava) 6:16

3+ y ago6:16

6:16

Episode 28 is hosted by Ava who welcomes her mom, Sherry to talk about what it's like to care for and support Ava's younger sister Lillian who has HAE. There have been some challenging times, but together they have been there to support Lillian through her diagnosis, treatments, and management of her HAE. This youth produced podcast is brought to y…

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#BeyondHAE: Understanding Anxiety (Carlie) 4:52

3+ y ago4:52

4:52

Many people with HAE experience anxiety. Episode 26 is hosted by Carlie who talks about managing and understanding anxiety while living with HAE, as well as letting listeners know they aren't alone in their struggles. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy org…

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#BeyondHAE: Chat with my Mom: Managing Life's Changes (Sophie) 12:08

3+ y ago12:08

12:08

Episode 26 is hosted by Sophie and her mom, Melanie. This episode is about learning to manage changes in life while managing HAE. Life changes are inevitable and learning effective coping strategies is important to ensuring that you are able to navigate those changes while still effectively managing your HAE. This youth produced podcast is brought …

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#BeyondHAE: Modern HAE medication has allowed me to live #BeyondHAE (Sophia) 7:34

3+ y ago7:34

7:34

Episode 25 is hosted by Sophia who lives in Connecticut. Beyond her HAE, Sophia runs track and is passionate about improving her times and advancing in her sport. She talks about how modern HAE therapies and the successful management of her disease has resulted in her having the best year yet in track. Sophia is an incredible example of a young wom…

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#BeyondHAE: Interview With My College Roommate (ReyJeanne) 12:14

4y ago12:14

12:14

Episode 24 is hosted by ReyJeanne and her friends from college. They talk about supporting ReyJeanne through some of the challenges that she experienced in college. From learning how to give emergency medication, supporting you during stressful times, and knowing your emergency plan, friends can play a big part in supporting you on your HAE journey…

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#BeyondHAE: 5 Years Can Make a BIG Difference (Luke) 4:40

4y ago4:40

4:40

Episode 23 is by Luke. This episode is all about Luke's HAE journey. From diagnosis, getting access to medication, insurance denials to getting involved in the HAEA youth programs and making life long friendships. Now Luke is participating in a clinical trial, paving the way for advances in medication options for other people with HAE. Luke's story…

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#BeyondHAE: My Emergency Room Experiences (Jack) 3:41

4y ago3:41

3:41

Episode 22 is hosted by Jack from New Jersey. Jack talks about his many trips to the ER and shares some stories about his experiences there. ER trips can be stressful and emotionally draining, but advocating for yourself and your needs is an important lesson that can reduce unnecessary procedures and wait times. This youth produced podcast is broug…

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#BeyondHAE: HAE and Sports (Noah) 5:05

4y ago5:05

5:05

Noah is an athlete and in this episode, he talks about what he does to make sure that HAE doesn't stop him from participating in the sports he loves. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver communi…

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#BeyondHAE: Talking to friends about HAE (HAEA YLC) 8:05

4y ago8:05

8:05

This episode is all about telling people in your life about your HAE. Hear from members of the HAEA Youth Leadership Council as they discuss everything from telling friends about HAE to coaches and teachers. Sometimes it's hard for our peers to understand, but other times, our friends surprise us with how supportive they can be. This youth produced…

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#BeyondHAE: Managing Stress (Ava) 5:46

4y ago5:46

5:46

Episode 19 is hosted by 10 year old Ava from California. Ava talks about the impact that stress has on her HAE attacks. She shares some strategies that she's learned over the years to cope with stress. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization servin…

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#BeyondHAE: Art is my Therapy (Gabriela) 8:17

4y ago8:17

8:17

Episode 18 is hosted by Gabriela from California. Gabriela shares her personal HAE story and talks about how art has helped her get through difficult times. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver …

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#BeyondHAE: Maddie's Story 8:05

4y ago8:05

8:05

This episode is hosted by Youth Leadership Council member and HAEA Social Media Intern, Maddie. In this episode, Maddie shares her HAE journey, from her diagnosis and many hospital visits, to becoming part of the HAEA Youth community and advocating for the HAE community on Capitol Hill. This youth produced podcast is brought to you thanks to the su…

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#BeyondHAE: Being Different is Normal (Kobe) 8:27

4y ago8:27

8:27

This episode is hosted by Kobe from Georgia. Kobe asks the question, what does it mean to be normal? As a young person with a chronic disease, many of us understand that we are a little different from our peers. As Kobe describes in this episode, being different is actually more normal than many of us realize. This youth produced podcast is brought…

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#BeyondHAE: Back to School Tips with the HAEA Youth Leadership Council 8:06

4+ y ago8:06

8:06

This special BONUS episode of the #BeyondHAE podcast is a roundtable discussion with the HAEA Youth Leadership Council. Hear from members of the HAEA Youth community as they share some of their back to school tips and tricks. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advo…

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#BeyondHAE: Advocating for yourself at school (Gabriela P.) 8:14

4+ y ago8:14

8:14

This episode of the #BeyondHAE Podcast hosted by Gabriela who talks about why it is important to speak up for yourself at school. While it’s not always easy to talk to the administration at school about your HAE, it’s important. If you'd like more information about 504 plans, here is the link that is referenced in Gabriela's episode: https://www.un…

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#BeyondHAE: Independence and Self-Administration (Sophia) 5:21

4+ y ago5:21

5:21

Episode 11 of the #BeyondHAE podcast is hosted by 16 year old Sophia, from Connecticut. This episode is all about Sophia’s road to independence and control over her HAE attacks. She talks about how self-administration has contributed to feeling confident and managed, and how finding the right medication has impacted her HAE story. This youth produc…

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#BeyondHAE: Travel Tips (Kyleigh) 5:13

4+ y ago5:13

5:13

This episode is hosted by 18 year old Kyleigh, from Texas. Kyleigh’s episode is all about travel tips to make traveling smooth and easy for people with HAE.. Although many of us might not be traveling at this time, it’s important to be prepared when you leave home for any amount of time. Tune into Kyleigh’s episode to learn more about how you can p…

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#BeyondHAE: Interview with my Mom (Carlie) 7:55

4+ y ago7:55

7:55

Episode 10 is hosted by Carlie from Louisiana. In this episode Carlie interviews her mom Mary, and they talk about everything from how they support each other to navigating relationships and friendships. Carlie and Mary provide some tips to support young people in relationship building with peers. This youth produced podcast is brought to you thank…

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#BeyondHAE: The Impact of COVID-19 on our lives and our HAE (HAEA Youth & HAEi Youngsters Collaboration) 22:15

4+ y ago22:15

22:15

BONUS Episode! The HAEA Youth and the HAEi Youngsters have come together to collaborate on this special episode of the #BeyondHAE Podcast. This roundtable discussion is all about the impact that COVID-19 (Coronavirus) has had on the lives of young people with HAE around the world. Hear from young adults living in South Africa, Greece, and the US ab…

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