Vidya CA

@vidyaca4

I will WIN. Not immediately BUT DEFINITELY. My son was diagnosed with Hunter syndrome in 2015.

Vrijeme pridruživanja: kolovoz 2015.

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    Did you know? Rare diseases currently affect 5% of the worldwide population. Download, edit and adapt the infographics from . Share them on social media to spread the word about Rare Disease Day on 29 February!

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    prije 19 sati

    We want to hear from you! So we can make sure our support & advocacy services match your needs throughout your journey as a patient, parent, friend or family member. Have your say by following this link & fill in the short form:

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  3. proslijedio/la je Tweet
    31. sij

    Rare Genomics has “Become A Friend” of Rare Disease Day. We are proud to stand along a national alliance of organizations for rare disease patients and patient organisations. You can see a full list here: Rare Disease Day is February 29th, 2020.

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    4. velj

    There are more than 300 million people worldwide living with a rare disease. Learn more about and how you can get involved! Together, we will make a difference.

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    4. velj

    Thank you to everyone who has followed along with the series. You can find resources for all of the workshops here:

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    4. velj
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    4. velj

    After managing for 12 years, Hayley C got with from surgery. While the condition has impacted her massively, Hayley’s love for her family helps her through each day. RT to raise to help awareness

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    4. velj

    We all have the capacity to act in the face of cancer. PatientsEngage supports and empowers cancer patients and survivors and their families.

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    4. velj

    Results from a recent survey show that people living with a rare disease are willing to share their health data to foster research or to improve their healthcare. Read more:

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    4. velj

    Getting ready for the big day? Check out the shop to find official merchandise for your events >>

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    4. velj

    Dr Sandy Macrae, CEO of Sangamo Therapeutics talks about the challenges of recruiting patients for clinical trials. Sangamo Therapeutics, Inc.

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    We are proud to be part of a community dedicated to improving diagnosis and treatment for people living with . This , find ways to get involved and read stories from around the world.

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    4. velj

    A mechanism recently discovered by researchers regulates activity in cells by targeting , which plays an important role in cellular activity.

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    4. velj

    Customise your Twitter profile picture with the Twibbon to show your support for people living with a rare disease around the world >>

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    5. velj

    In hopes it will create a model for the future, the Initiative announced this week it will give grants and other resources to 30 patient groups working to treat .

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    4. velj

    Since today is , we want to share some resources that may help patients currently in the fight. is a treatment approach that modifies immune system cells to recognize and kill cells. Learn more here:

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    3. velj

    is held on the last day of February every year world wide to raise awareness of rare diseases. Rare is strong. Rare is proud. Rare is many Share and support

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    4. velj

    Dr. Spencer says that patients and caregivers know a lot more about the disease than most of the physicians that they talk to. How do we get that input appropriately into clinical trials?

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    4. velj

    First , now ? editing could allow clinicians to make temporary fixes that eliminate mutations in proteins, halt their production, or change the way that they work in specific organs and tissues.

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