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In this episode of Confessions of a Rare Disease Mama, we dive into the complexities of family transitions with Mary Ann Hughes, a certified Special Needs Divorce Coach. Mary Ann took her own experience of navigating divorce after 21 years of marriage, and raising two children on the autism spectrum, into a mission to help others. Mary Ann shares her invaluable insights and compassionate guidance on navigating divorce and separation when a child has profound medical and/or behavioral needs. We discuss the unique challenges these families face, from planning for financial security to co-parenting with empathy, and how to approach these transitions with strength and clarity. Join us for this heartfelt conversation that sheds light on support systems and resources designed to help families move forward with resilience.

Learn more about Special Family Transitions
Follow Mary Ann on instagram: @specialfamilytransitions
Special Family Transitions YouTube Channel
Low Priced Mini Course Mastermind

*MARK YOUR CALENDARS*
My first children's book, Soaring Together: A Butterfly Family's Story of Discovery, Love, and Resilience, will be available for purchase on 11/11/24!

Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.

https://www.confessionsofararediseasemama.com/

Get your FREE Positive Affirmations for the Medical Parent PDF here!

Buy your "Embracing the Rare" T-shirt & other merch!

Learn more about my children's fight with ASMD and donate to our cause

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Tune in to this mini episode to learn what my exciting, big announcement is! It's a very special project I've been quietly working on for years & cannot wait to share it with you all!



Donate to Hurricane Helene recovery efforts in NC here
Donate to Hurricane Helene recovery efforts in FL here

Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.

https://www.confessionsofararediseasemama.com/

Get your FREE Positive Affirmations for the Medical Parent PDF here!

Buy your "Embracing the Rare" T-shirt & other merch!

Learn more about my children's fight with ASMD and donate to our cause

Follow us on instagram!

Send us a text

In this episode I welcome back (for a repeat appearance!) Director of Community Engagement of Global Genes, Mr. Daniel DeFabio. During our conversation, we dive deep into the many facets of advocacy that we, as rare parents and caregivers deal with. Daniel shares his vast knowledge and experience in the rare disease community and together we break down the eight different types of advocacy that every rare disease parent/caregiver or patient can engage in.

From policy advocacy to school support, Daniel explains how each form of advocacy plays a vital role in making an impact, whether you’re new to advocacy or a seasoned advocate looking to expand your influence. We explore how these various types empower families, patients, and communities to drive change at both a personal and systemic level.

Tune in to gain valuable insights on how you can take actionable steps in your advocacy journey, no matter where you are in your path, and learn more about the incredible work of Global Genes in uniting the global rare disease community.

Daniel's 8 Stages of Advocacy Article
Learn more about Daniel DeFabio

Register for Global Genes Patient Advocacy Summit
Learn how to tell your story
Beginners guide to rare disease

Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.

https://www.confessionsofararediseasemama.com/

Get your FREE Positive Affirmations for the Medical Parent PDF here!

Buy your "Embracing the Rare" T-shirt & other merch!

Learn more about my children's fight with ASMD and donate to our cause

Follow us on instagram!