Raremark Health
Our vision is a future in which all rare conditions are understood and treated.Raremark is for patients, parents, and caregivers. If you’re affected by a rare condition, Raremark is where you can learn and share tips, life hacks, and real-world experiences. It’s the type of wisdom that can only come from experts like you, who deeply understand what it’s like to live every day with a rare disease.
On our KZitem channel, you can find videos on all aspects of rare disease: from what it is like to live with a condition day-to-day, to a specialist's advice to families who are considering taking part in research.
If you'd like to be interviewed about your experiences living with a rare disease contact us on [email protected].
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- 3 жыл бұрын
ADventure trial for Adult CAH by Adrenas therapeutics
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- 3 жыл бұрын
Clinical study in myasthenia gravis
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- 3 жыл бұрын
Myasthenia gravis clinical study
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- 3 жыл бұрын
Idiopathic pulmonary fibrosis clinical study
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- 3 жыл бұрын
Urea Cycle Disorder clinical study
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- 4 жыл бұрын
Phillip's Story: Growing up with sickle Cell
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- 4 жыл бұрын
What does it mean to be an advocate?
- 1:36
- 4 жыл бұрын
Phillip's story: Growing up with sickle cell
- 2:07
- 4 жыл бұрын
What it means to be a Sickle Cell Warrior
- 2:46
- 4 жыл бұрын
Sickle cell and the basics of gene therapy
- 1:13
- 4 жыл бұрын
Shamonica's story: Why self care is so important
- 2:35
- 4 жыл бұрын
Common concerns about gene therapy for sickle cell
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- 4 жыл бұрын
Gene therapy for sickle cell: When can we expect it?
- 4:13
- 4 жыл бұрын
How can you become an advocate?
- 2:12
- 4 жыл бұрын
Ijeoma's story: Living life to the fullest
- 2:28
- 4 жыл бұрын
Ijeoma's story: How you can become an advocate
- 2:01
- 4 жыл бұрын
Ijeoma's story: "You don't look like you have sickle cell"
- 3:31
- 4 жыл бұрын
Ijeoma's story: Starting my advocacy journey
- 1:46
- 4 жыл бұрын
How can I access genetic counseling services?
- 2:26
- 4 жыл бұрын
"I have a blood relative with IPF: How can genetic testing help me understand my risk?"
- 2:41
- 4 жыл бұрын
Genetic testing and IPF: What can the results tell us?
- 2:41
- 4 жыл бұрын
Is IPF genetic?
- 2:26
- 4 жыл бұрын
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