Raising Awareness for Rare Diseases
#ProudToBeRare

At ALD Hope, we are dedicated to supporting individuals and families affected by Adrenoleukodystrophy (ALD), Addison’s disease, and other rare conditions. Through our #ProudToBeRare campaign, we share powerful personal stories, highlighting the challenges, resilience, and strength of those living with rare diseases.

This campaign is more than just a collection of videos—it is a movement. A movement to educate, inspire, and advocate for better awareness, early diagnosis, and medical support. In our main video, you will hear the voices of patients, caregivers, and advocates coming together to tell the world: We are here. We are strong. We are #ProudToBeRare.

#ProudToBeRare – Raising Awareness for ALD & Rare Diseases

At ALD Hope, we believe that every story matters. Our #ProudToBeRare campaign highlights the voices of those living with Adrenoleukodystrophy (ALD), Addison’s disease, and other rare conditions—shedding light on their challenges, resilience, and hope.

In this powerful video, real patients share their personal journeys, from diagnosis to daily life, emphasizing the importance of early detection, medical support, and community advocacy. By watching and sharing, you help raise awareness and bring hope to families facing rare diseases.

#ProudToBeRare – Amplifying Voices of Rare Disease Warriors

At ALD Hope, we are committed to raising awareness for Adrenoleukodystrophy (ALD), Addison’s disease, and other rare conditions. Through the #ProudToBeRare campaign, we share the voices of patients and families who bravely navigate life with a rare disease.

In this inspiring video, Victoria Fair shares their personal journey highlighting the challenges, resilience, and the power of advocacy in the rare disease community. Their story is a reminder that no one is alone in this fight.

#ProudToBeRare – Sharing Strength, Raising Awareness

At ALD Hope, we believe that every voice in the rare disease community deserves to be heard. Through our #ProudToBeRare campaign, we bring forward the stories of individuals and families affected by Adrenoleukodystrophy (ALD), Addison’s disease, and other rare conditions.

In this video, Heather Niks shares their powerful journey highlighting the challenges, determination, and hope that come with living with a rare disease. By spreading awareness, we can make a difference in early detection, research, and support for those who need it most.

#ProudToBeRare – A Voice for the Rare Disease Community

At ALD Hope, we are dedicated to raising awareness for Adrenoleukodystrophy (ALD), Addison’s disease, and other rare conditions. Our #ProudToBeRare campaign shares the personal stories of individuals and families who navigate the realities of life with a rare disease.

In this inspiring video, Riham Badawy opens up about their journey—shedding light on the challenges, resilience, and the power of advocacy. By sharing these stories, we aim to create awareness, support early diagnosis, and bring hope to those facing similar battles.

#ProudToBeRare – Raising Awareness, Inspiring Hope

At ALD Hope, we are committed to amplifying the voices of individuals and families affected by Adrenoleukodystrophy (ALD), Addison’s disease, and other rare conditions. Through our #ProudToBeRare campaign, we share their powerful stories to spread awareness and foster a supportive community.

In this video, Josie Menesis shares their journey—highlighting the challenges, strength, and resilience that define life with a rare disease. By listening, sharing, and advocating, we can help bring attention to early diagnosis, medical support, and much-needed research.

#ProudToBeRare – Sharing Stories, Spreading Awareness

At ALD Hope, we believe in the power of storytelling to bring awareness and hope to the rare disease community. Our #ProudToBeRare campaign highlights the journeys of individuals and families affected by Adrenoleukodystrophy (ALD), Addison’s disease, and other rare conditions—showcasing their strength, challenges, and determination.

In this video, Maria De La Pava shares their personal experience, offering insight into the realities of living with a rare disease. By spreading awareness, we can make a difference in early diagnosis, research, and support for those in need.

#ProudToBeRare – Voices of Strength and Hope

At ALD Hope, we are dedicated to raising awareness and supporting individuals affected by Adrenoleukodystrophy (ALD), Addison’s disease, and other rare conditions. Through our #ProudToBeRare campaign, we amplify the voices of those living with rare diseases, sharing their powerful stories to inspire change and encourage early diagnosis.

In this video, Melanie Westover shares their journey highlighting the challenges, resilience, and hope that define life with a rare disease. By sharing these stories, we help build a more informed and supportive community.

#ProudToBeRare – Voices of Strength and Resilience

At ALD Hope, we believe that every story has the power to create awareness and drive change. Through our #ProudToBeRare campaign, we highlight the experiences of individuals and families affected by Adrenoleukodystrophy (ALD), Addison’s disease, and other rare conditions—shedding light on their challenges, strength, and hope.

In this video, Terry Holden shares their personal journey, offering an inside look at life with a rare disease. By raising awareness, we can help improve early diagnosis, support medical advancements, and build a stronger community for those living with rare conditions.

#ProudToBeRare – Raising Awareness, Inspiring Change

At ALD Hope, we are committed to giving a voice to individuals and families affected by Adrenoleukodystrophy (ALD), Addison’s disease, and other rare conditions. Through our #ProudToBeRare campaign, we share powerful personal stories to educate, inspire, and advocate for the rare disease community.

In this video, Olivia Viola shares their journey—offering insight into the daily challenges, resilience, and strength it takes to live with a rare disease. By spreading awareness, we can drive meaningful change in early diagnosis, medical support, and research advancements.

#ProudToBeRare – Rare Disease Journey

At ALD Hope, we are committed to raising awareness for Adrenoleukodystrophy (ALD), Addison’s disease, and other rare conditions. Through our #ProudToBeRare campaign, we amplify the voices of those living with rare diseases, sharing their powerful stories to inspire change and encourage early diagnosis.

In this video, Debbie shares their journey—highlighting the challenges, resilience, and hope that define life with a rare disease. By sharing these stories, we help build a more informed and supportive community.

#ProudToBeRare – Rosbeidy Simancas Shares Her Rare Disease Journey

At ALD Hope, we are committed to raising awareness for Adrenoleukodystrophy (ALD), Addison’s disease, and other rare conditions. Through our #ProudToBeRare campaign, we share real stories from individuals and families facing the challenges of rare diseases, highlighting their strength, resilience, and hope.

In this video, Rosbeidy Simancas shares her personal journey, offering insight into life with a rare disease and the importance of early diagnosis, medical support, and advocacy. By spreading awareness, we can help make a difference in the lives of those affected.

#ProudToBeRare – Patrick Fuellbeck Shares His Rare Disease Journey

At ALD Hope, we are dedicated to raising awareness for Adrenoleukodystrophy (ALD), Addison’s disease, and other rare conditions. Through our #ProudToBeRare campaign, we share the personal stories of individuals and families facing the challenges of rare diseases, highlighting their strength, resilience, and hope.

In this video, Patrick Fuellbeck shares his journey, offering insight into life with a rare disease and the importance of early diagnosis, medical support, and advocacy. By spreading awareness, we can help make a difference in the lives of those affected.

#ProudToBeRare – Genna Rod Shares Her Rare Disease Journey

In this video, Genna Rod shares her journey, offering insight into life with a rare disease and the importance of early diagnosis, medical support, and advocacy. By spreading awareness, we can help make a difference in the lives of those affected.

🚨 Ontario Launches Pilot Newborn Screening for ALD

We are thrilled to share an exciting milestone for the Adrenoleukodystrophy (ALD) community! Dr. Neal Sondheimer, Medical Director of Newborn Screening Ontario, has officially announced that Ontario will launch a pilot newborn screening program for ALD this year.

Why This Pilot Program Matters:

✔ Early detection can save lives by identifying ALD before symptoms appear.
✔ Access to early medical intervention improves long-term outcomes.
✔ A significant step forward in rare disease screening and advocacy in Canada.

This pilot screening program is a crucial advancement toward ensuring that newborns diagnosed with ALD receive timely care and treatment. It represents a hopeful step toward expanding newborn screening efforts across the country.

Raising Awareness for Rare Diseases #ProudToBeRare