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On 26 September, we held our 2017 Annual Conference in London. It was excellent to see so many of our members attending, engaging with us and sharing their views, and sharing their experience with other like-minded charities.

We commenced the day with our Annual General Meeting, in which we were delighted to re-elect Chris Goard as a trustee and elect four new trustees: Gloria Clark, Sara Hunt, Sue Millman and Elizabeth Porterfield. They will no doubt be an invaluable addition to the team.

Our Chief Executive, Jayne Spink, welcomed our members and spoke on the achievements of Genetic Alliance UK over the past year, and plans moving forward. This was followed by our first key note speaker, Pauline Broomhead, CBE, from the Foundation for Social Improvement (FSI), who delivered a powerful, informative speech on the implications of Brexit for small and local charities and community groups. Pauline highlighted the key concerns local charities had about Brexit, including the uncertainty of retaining EU rights and funding, and she also spoke about the free support available from the FSI for these charities.

After a networking lunch giving attendees a chance to discuss their various charity’s work, share expertise and meet our team, all headed to their chosen parallel workshop sessions.

Highlights of our Parallel Workshops

Using Social Media to Engage your Community

In the social media workshop, we heard from James Shaddock, Social Media Strategist at Cystic Fibrosis Trust and Lucinda Blaser, Senior Engagement Officer at the House of Commons. James described the genetic condition cystic fibrosis and how 1 in 25 of us carry the faulty gene. He explained how to maximise social media engagement to best represent your community and Lucinda described how to best host a digital debate to enable your community to engage with MP’s and have their voices heard.

We also heard from Joanne Taylor, Marketing and Fundraising Manager at Climb. Joanne spoke about how they start discussions on inherited metabolic disorders by setting up social platforms for their community to communicate from, and how they engaged their community by setting up the #MyMetabolicHero campaign.

Fundraising for a Small Charity

Daniel Lewi, co-founder of CATS Foundation, set up the charity when his eldest daughter was diagnosed with Tay- Sachs in 2011.  Daniel’s highlighted the importance of defining your organisation priorities. The CATS Foundation, for instance, works on one project a year. Using this method they have developed a children’s book, a diagnosis pack and an app, amongst other things. A top tip from Daniel was to not be afraid to ask for what you want and to get the community involved in projects.

Becky Hardiman, CEO of Fragile X Society, focused on community fundraising. Like in many small charities, members wanted to get directly involved in fundraising events, so Becky set up a virtual challenge to travel the total distance around the UK of approximately 8,026 miles to raise awareness and funds for Fragile X Syndrome; participants could travel in any way they chose to complete the total distance and this proved a hit for fundraising. Becky’s talk complemented Daniel’s very well, both covering different aspects of fundraising and giving members an insight into how they have raised funds for their small charities.

Supporting and Developing Specialised Clinics

In the specialised clinics workshop, we heard from Annabelle’s Challenge founder, Jared Griffin, and Liz Gill from the British Porphyria Association, about the respective specialised centres available for both Ehlers-Danlos syndrome (EDS) and porphyria.

Jared shared how his daughter Annabelle had inspired him to set up the charity. Annabelle’s challenge runs with three main objectives in mind: education, research and support. Part of what the charity aims to do is to educate medical professionals about vascular EDS and help produce emergency cards to help sufficiently inform doctors upon admissions to A&E. They have also built up a relationship with the clinics so that they refer families on to the charity to provide support post-diagnosis.

Liz Gill’s talk focused more on the importance of maintaining a specialised clinic for porphyria. Liz spoke about how especially important these are for those who experience severe attacks, as there is only one drug available which many clinicians are not practiced in giving. She also highlighted the need for a specialised and engaged consultant, which the patient community have fought for in the past when the prospect of a non-specialist consultant was proposed.

Providing Support for your Community

In the ‘Providing support for your community’ workshop, we heard from Kerry Lesson-Beavers from Alstrom Syndrome UK. Kerry is also the National Development Manager & Project Lead for the Breaking Down Barriers project. She spoke about how this project enables patient organisations and support groups to share examples of best practice and develop new guidelines to highlight effective ways to support families who are at an increased risk of having children with a genetic condition, but who are unlikely or unable to access mainstream support. Mariana Campos from Genetic Alliance UK is on the steering committee and SWAN UK (syndromes without a name), the support network run by Genetic Alliance UK, is one of the organisations involved along with several member organisations of Genetic Alliance UK. Kerry highlighted how the Breaking Down Barriers Project has been running for a year so far and is inviting other organisations to join the project as it enters year two. If you would like to find out more about the project email Kerry or visit the website.

We also heard from Anne Eddington and Wahida Pervaiz from East Lancashire Community Genetics Team. They help families to get a diagnosis and understand and benefit from screening tests for immediate and extended families. They also offer advice and support to families with genetic conditions when either a child or parent is affected. They talked about the barriers that professionals can face when trying to talk to families about genetic testing and screening but emphasised the importance of professionals taking the time to build relationships with families of children who have a genetic condition and most importantly listening to their views.

After the workshops, we held an interactive session where we discussed three key questions with our members:

  • What are the most pressing issues from you in the coming year that would benefit from our involvement?
  • What type of engagement activities are you most interested in?
  • What type of news and information would you like to receive from us? And how?

We also launched the membership review survey as part of our aim to better understand our members’ needs and improve our membership engagement.

Lastly, we heard from our closing keynote speaker, Prof Bobby Gaspar, Head of Rare Diseases Theme, Head of Molecular and Cellular Immunology Section, Professor of Paediatrics and Immunology from the UCL Great Ormond Street Institute of Child Health. Bobby shared his exceptional research on severe combined immunodeficiency (SCID), and improving the outcomes for rare diseases like SCID through newborn screening and novel therapies. He predicts that newborn screening and gene therapy could bring us from 100% mortality to 100% survival with SCID patients.

Thank you to everyone that attended and to all our speakers for your outstanding contributions.

If you have any questions or want to give feedback on the 2017 Annual Conference, please email Mariana Camposcreate new email.

You can download the slides here:

Highlights of the year, Jayne Spinkopens POWERPOINT file

Fundraising workshop, Daniel Lewi and Becky Hardimanopens POWERPOINT file

Specialised clinics workshop, Jared Griffinopens POWERPOINT file

Support for your community workshop, Anne Edington and Wahida Pervaizopens POWERPOINT file

Prof Bobby Gaspar keynote presentationopens POWERPOINT file

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