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READ, LEARN, SAVE, PRINT & SHARE

The following downloads have been created by our RARE Revolutionaries Community as a collaborative body of work, harnessing the collective voices of our diverse community of patients, advocates and charities to share their joint voice on the issues that matter to them. All files can be downloaded straight to your device for printing, and for ease of sharing via email or across your social media channels. We ask you to please READ, LEARN, SAVE, PRINT and SHARE and help us turn to the tide for those living with rare disease.

READ, LEARN, SAVE, PRINT & SHARE

10 Top Tips for ​RARE parents

10 Top Tips for ​RARE parents

Being a parent sets your life on a whole new trajectory, the experience of raising little people is a whirlwind journey full of surprises and lessons. Being a parent with a rare disease or condition can sometimes make parenthood unpredictable and challenging. David Ross and Adam Johnson are both RARE Dads. They share their advice for parenting whilst managing your own health and making sure you make the most of your little ones growing up.

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10 Top Tips for ​RARE parents of RARE children

10 Top Tips for ​RARE parents of RARE children

Becoming a parent is one of the biggest moments in your life and yet nothing can prepare you for the twists and turns of parenthood, especially the event of a rare disease diagnosis for your child. Rebecca Pender understands first hand how to navigate the journey as a parent of a child with a rare condition, here she shares her advice and wealth of wisdom as someone who has been through the ups and downs of rare parenting.

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Top 10 Tips for RARE Healthcare Providers

Top 10 Tips for RARE Healthcare Providers

Attending countless hospital and medical appointments can be exhausting, demoralising, fraught with anxiety and at times tedious for families living with rare disease. Whether it is a first appointment or part of a long-standing patient - clinical relationship, here are the Top 10 Tips according to our community, to help make the process that little bit easier.

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Bereavement Advice - Navigating RARE Grief

Bereavement Advice - Navigating RARE Grief

​We reached out to our RARE community to ask families who have suffered the loss of a family member, to complete a short survey. We have compiled their responses to create two downloadable resources. Navigating RARE grief - offers guidance on how to best support grieving families and how to start a conversation about bereavement.

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​Bereavement Advice - Living with RARE Grief

​Bereavement Advice - Living with RARE Grief

Insights from our RARE Revolutionaries community about how to find a new normal and strategies for living with RARE grief, based on our community survey with advice for those currently on their own personal journey with grief.

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10 Top Tips for ​RARE Employees

10 Top Tips for ​RARE Employees

Landing your dream job when living with a rare disease, or with care-giver responsibilities can be daunting and arduous. Our RARE Revolutionaries community have a wealth of experience to share on this matter, and here are their top tips for getting and keeping that dream role.

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Rare resources

The following resources are supplements created in partnership with 3rd party rare disease stakeholders, which we are delighted to share for your interest and information.

Cystinuria

In the Spotlight

Clinical Spotlight

The Future of Clinical Trials

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