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Huntington's Community Connect

Welcome/Start here

Welcome

If you are new to our HCC network, you have come to the right place. This Forum has been created to be for the community to have a safe and respectful space to further strengthen our connections. You can introduce yourself by starting a new conversation in this page or read through the available posts to get to know the ins and outs of the forum and how it can help you get connected.

The staff at HV are present and involved in this Forum as moderators during Business hours and can also assist in any concerns or questions you may have. The moderations will be overseeing that the Community guidelines and rules of the forum are being followed, as well as keeping forum members safe.

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Forum Participants
ShreeshaVSue Bjenclark
Carers, family & friends

Carers, family and friends

HD can have a significant impact not just on the person affected but also on their carers, family members, friends and other people around them. This page provides a safe and and positive space for family, friends and/or carers of someone living with HD, to share their experiences, ask questions and/or support other people in the similar situation. Everyone connected to someone with HD is welcome to participate in these discussions.

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5
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9
Forum Participants
jenclarkCarlyjevricSue B
Get Involved

Get Involved

This forum is where you can find information on how to get more involved with the HD community, whether you are interested in events, fundraising, volunteering or simply following HV on social media. If you are holding a fundraising and/or awareness raising event on HD, you can also use this page to advertise your event. If you are interested in HV events, community engagement activities, and/or would like to become a HCC peer leader, you may also use this page to express your interest.

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8
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Forum Participants
CarlyjevricnatjevZani
Health & Wellbeing

Health & Wellbeing

This page is where you can share experiences, treatments and strategies that helps in maintaining your health and well-being. Please note that giving direct health advice to others (such as what medications or therapies to utilise) is not appropriate unless you are a trained medical or allied health professional and understand an individual person’s needs. It can be challenging to differentiate between sharing experiences and giving advice so please don’t hesitate to contact HCC peer leaders if you are unsure.

HV will also use this page to share beneficial, non-medical strategies that may help in maintaining general wellbeing and HD symptom management.

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6
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14
Forum Participants
SammyZaniSally
Lived experience

Lived experience

This forum is the space to share and read personal experiences and stories of living with HD. You may want to share about a particular stage of your journey, the impact it had, memories, challenging times or decisions you had to make and what helped you to get through it.

You can also share the joys, triumphs and achievements of your life. Or perhaps you just want to share something else about yourself, your interests and what is important or inspiring to you!

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12
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46
Forum Participants
CarlyjevricSue BNobby
New to HD

New to HD

If you, a family member or a friend are learning about or dealing with HD for the first time, this is a place for you to learn and share your story, what you are going through or raise any concerns you may have. Perhaps you are at risk of HD and are thinking about getting tested. Maybe you are considering whether to tell others about your gene status. Maybe you are considering the future and how HD may impact on it and your decisions.

Or maybe you have just found out a family member or friend is diagnosed or at risk of HD. Remember you can also contact the HV Information service to discuss and receive support about your individual situation.

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4
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12
Forum Participants
LauraC
Ask the Expert

Ask the Expert

Have a question for us?

This page is available for you to raise specific questions about HD and to receive evidence-based and reliable information from HV staff and other experts in the field such as from HD Specialists and allied health professionals.

HV will also be sharing educational information, news and webinars in this page from time to time.

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Upcoming Events

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HCC is not a crisis service so if you require immediate support and/or feel in danger or unsafe, we recommend that you please contact 000 or one of the following crisis support services.