Rafi & Michael: Living with epidermolysis bullosa (EB)
6:52
Rafi & Michael: Living with epidermolysis bullosa (EB)
2 ай бұрын
It's Rare For Me - Chiara - Call back to reality
8:16
It's Rare For Me - Chiara - Call back to reality
3 ай бұрын
It's Rare For Me - Nicola - My future in my hands
6:20
It's Rare For Me - Nicola - My future in my hands
3 ай бұрын
Living with Fabry Disease: Personal Stories of Challenge and Hope
5:15
Living with Fabry Disease: Personal Stories of Challenge and Hope
6 ай бұрын
This is not a cookie-cutter thing: Meet Phil, advocating for himself and others with HoFH
4:57
This is not a cookie-cutter thing: Meet Phil, advocating for himself and others with HoFH
7 ай бұрын
It's Rare For Me - Camillo - Planning accordingly
9:57
It's Rare For Me - Camillo - Planning accordingly
7 ай бұрын
It's Rare For Me - Thomas - Blazing the trail
9:18
It's Rare For Me - Thomas - Blazing the trail
7 ай бұрын
Acromegaly: Stories of Strength and Resilience
4:41
Acromegaly: Stories of Strength and Resilience
7 ай бұрын
It’s Rare For Me - Ria - My son has grown enough
8:31
It’s Rare For Me - Ria - My son has grown enough
8 ай бұрын
It’s Rare For Me - Paola - You can’t see I’m blind
10:08
It’s Rare For Me - Paola - You can’t see I’m blind
8 ай бұрын
It's Rare For Me - Haiko - As a parent don't give up
7:55
It's Rare For Me - Haiko - As a parent don't give up
8 ай бұрын
It's Rare For Me - Konstantinos - Walking on your own legs
8:13
It's Rare For Me - Konstantinos - Walking on your own legs
8 ай бұрын
Meet Rhonda, mother of two sons living with Alpha-Mannosidosis
6:14
Meet Rhonda, mother of two sons living with Alpha-Mannosidosis
Жыл бұрын
The Power of Collaboration: Joining Together to Share Gratitude for the EB Community
4:07
The Power of Collaboration: Joining Together to Share Gratitude for the EB Community
Жыл бұрын
“I’m a walking miracle, I’ll say that” Meet Gina, living with Thalassemia
6:00
“I’m a walking miracle, I’ll say that” Meet Gina, living with Thalassemia
Жыл бұрын
Cindy - living with ADA-SCID, helping other people via NAMI.
6:00
Cindy - living with ADA-SCID, helping other people via NAMI.
Жыл бұрын
"Give yourself permission to be joyful." Racquel, living with ADA-SCID
6:02
"Give yourself permission to be joyful." Racquel, living with ADA-SCID
Жыл бұрын
Elevating the Patient Voice: Perspectives from the Fabry Community
4:01
Elevating the Patient Voice: Perspectives from the Fabry Community
Жыл бұрын
Fabry diagnosis leads to treatment, treatment leads to innovation: Tia & Brian, Testing for Tots
5:59
Fabry diagnosis leads to treatment, treatment leads to innovation: Tia & Brian, Testing for Tots
Жыл бұрын
Super Jakob: Bubble Boy, Little Fighter | Behind Every Superhero There's a Super Mom & Dad
5:59
Super Jakob: Bubble Boy, Little Fighter | Behind Every Superhero There's a Super Mom & Dad
Жыл бұрын
Meet Storma: A Healing Presence in the Sickle Cell Disease Community
4:31
Meet Storma: A Healing Presence in the Sickle Cell Disease Community
Жыл бұрын
Fabry disease and mental health: “You can do it. You’ve done harder things.” - Isabella
5:18
Fabry disease and mental health: “You can do it. You’ve done harder things.” - Isabella
Жыл бұрын
Introducing Alpha-Mannosidosis
2:48
Introducing Alpha-Mannosidosis
2 жыл бұрын
Zina and RayRay: A Symbol of Hope
7:11
Zina and RayRay: A Symbol of Hope
2 жыл бұрын
Meet Sarah, An Alpha-Mannosidosis Advocate Spreading Joy and Positivity
4:41
Meet Sarah, An Alpha-Mannosidosis Advocate Spreading Joy and Positivity
2 жыл бұрын
Resilience of the Rare Disease Community
0:30
Resilience of the Rare Disease Community
3 жыл бұрын
Achieving Sustainable Development Goals: Health for All at All Ages
0:37
Achieving Sustainable Development Goals: Health for All at All Ages
3 жыл бұрын
Revolutionizing the Lives of Patients
1:03
Revolutionizing the Lives of Patients
3 жыл бұрын
New Opportunities to Make a Difference
0:39
New Opportunities to Make a Difference
3 жыл бұрын
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