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January 2021 Newsletter

Jumping in to 2022......
A very Happy New Year from the BHD Foundation Team.  We are so excited to start a fresh new year with some amazing events for the next 12 months and as ever some really great and informative blogs.
Community News
Save the Date
We are delighted to announce the date of the 2022 BHD Community Symposium. This year we are hosting one event specifically for the BHD community (people with BHD and their friends and family) , featuring the latest science news, plans to raise awareness, and a chance for the community to network and provide mutual support.
The event will be virtual, free of charge and registration will open later this year.
Thank You!
A big thank you to all attendees at January's Meet the Expert.  During the event we discussed events, social media and awareness days and it was fantastic to receive your comments. We are very excited for this coming year, and we really appreciated your feedback to help us shape future events and patient engagement.
Mystery Monday and Tweeter of the Month
Thank you to everyone who contributed to Mystery Monday on 10 Janaury. Mystery Monday is a weekly event hosted on Instagram by Medics 4 Rare Diseases (M4RD).  M4RD are a charity dedicated to raising awareness of rare conditions among doctors and medical students. Each Monday they put together an Instagram story aimed at doctors to raise awareness of rare conditions. On Monday 10 January BHD took centre stage and only 12% of doctors that took part had heard about BHD. You can see the BHD Instagram story here.

This was a fantastic opportunity to get involved in as doctors who had never previously heard of BHD were educated about it and now have the tools to recognise and diagnose BHD. We loved working with M4RD and therefore couldn’t think of anyone better to be our Tweeter of the Month. You can follow them on twitter here!
Rare Compassion Programme
The RARE Compassion Program is an opportunity for medical students to develop relationships with individuals and their families experiencing a rare disease diagnosis. The goals of the programme include developing compassion and awareness for the challenges that individuals and families living with a rare disease are faced with every day. It connects medical students with individuals and families with rare diseases to help foster meaningful doctor-patient relationships, inspire careers in rare disease care and research and build the next generation of future medical professionals as key advocates for their patients. Applications for the programme are now open. Find out how to apply and more here.
Get Involved
Meet the Expert: BHD and the Skin
Be the first to register for our next Meet the Expert event taking place Wednesday 06 April at 5pm BST (12pm EST). We are delighted to announce Dr Edward Cowen will be our next expert discussing his work on BHD and the skin. Dr Cowen is Senior Clinician and Head of the National Institutes of Health (NIH) Dermatology Consultation Service and specialises in the evaluation of rare dermatologic syndromes. We are extremely excited to be hosting this event and are looking forward to hearing Dr Cowen share his wealth of knowledge on the subject. As always, there will be a Q+A session during the event, so register now to secure your place and ask Dr Cowen all your skin related questions!
Rare Disease Day 2022: Share your colours
28 February is rare disease day. This is an international event dedicated to raising awareness and initiating change for everyone living with a rare condition. We will be active on social media, joining in the discussion and launching our new BHD resources, including an awareness leaflet and inspirational short film.
There are several ways that you can get involved
  • Share our social media posts to raise awareness of BHD
  • Light up your house with the rare disease day colours using your laptop – Information on how to do this is available here and don’t forget to share it on social media and tag us @BHDSyndrome for Twitter and  BHD Foundation for Facebook
  • Explore the Rare Disease resources which includes a school and equity toolkit.
  • Find events near you with The Rare Disease Day event finder.
We look forward to seeing you there!
Patient Advisory Board
Applications are now open to join our patient advisory board. We passionately believe that those living with BHD and their families should have the opportunity to give their opinion on the research we fund and the work we do. We are looking for members of the BHD community to join our advisory board and provide their insight and thoughts on our work.
Members of the advisory board will be given the opportunity to get involved with a number of projects including:
  • Reviewing our research funding applications (no scientific background is needed)
  • Joining the yearly board meeting
  • Taking part in focus groups for events
To find out more register your interest here.
Science News 
BHD Foundation Highlights 2021
In our first blog post of 2022 the BHD Foundation shared their personal highlights from 2021 and how we plan to continue to support the BHD community through 2022 and beyond.
Winter BHD Case Report Round-Up
We featured three BHD Winter Case Reports discussing kidney cysts, BHD-related kidney cancer and a diagnosis through incidental findings on a CT scan.
BHD Toolkit: Understanding your Genetic Test Result – Amino Acid Mutations
Our BHD toolkit this month followed on from last month’s understanding your genetic sequencing result at the DNA level and guided you through understanding your result at the protein level.
Can Benign Tumours in Tuberous Sclerosis Complex be Treated with Immunotherapy?
Our last blog post of January featured a recent paper investigating a new type of treatment for tumours in Tuberous Sclerosis Complex, a rare condition with similar features to BHD.
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