Become a member


Volunteer with us and make a difference

Annabel Griffiths volunteered her time and skills in June and July 2021.

"Hi everyone, my name is Annabel Griffiths and I’ve just finished a 2-month volunteering placement at the amazing CGD Society. If you are considering doing something positive to bring a new dimension to your daily routine, then volunteering with CGD Society could be for you. Please read on and feel free to contact me at if you have any questions.

My day job is working for a healthcare consultancy called Costello Medical, where I lead a Rare Diseases Division working with organisations such as pharmaceutical companies that are developing medical treatments. In our everyday work my team frequently get the pleasure of meeting and collaborating with rare disease patient groups, who routinely move mountains to benefit the communities they support. I am always amazed by the passion, dedication and commitment these groups show, often in the face of incredible financial and administrative challenges.

After working at Costello for 6 years and setting up our rare diseases team in 2018, I decided to take a 3-month sabbatical. My aim was to broaden my horizons beyond the world of consultancy and use my skills to contribute to the rare disease community. I met Claire, Fundraising and Operations Manager at the CGD Society, as part of last year’s Findacure patient group mentoring programme. Over the past year, I had been learning about CGD Society and the amazing work Claire does. I was thoroughly inspired by the history of the charity and everything it has achieved over the past 30 years. Moreover, Claire shared her objectives with me, bringing into life the possibilities that the future holds for the CGD Society. When it came to my sabbatical it was an obvious choice to see if CGD Society would give me a volunteering home for a few months, and I was absolutely delighted to be welcomed as a volunteer in June this year.

Over the past 2 months I have been volunteering for 2 days per week, working closely with Claire on a number of projects. These have ranged from projects very much in my skillset, such as creating a PowerPoint slideset for Claire to take to future conferences and researching quality of life tools that could be used in CGD, to the completely unknown! I have learned about how to develop a multilingual website and the governance requirements of a charity. More specifically, I have been revising and updating the CGD Society data protection and privacy policies, learning about the specific data obligations of a small not-for-profit. A real highlight has also been working with Claire and Adelle on the 30th anniversary celebrations, where I’ve been speaking to companies about donating prizes, figuring out how we run online bingo and drafting social media content.

What have I learned? I have learned so much volunteering with the CGD Society. The experience has gone above and beyond my expectations and I cannot recommend enough doing something similar if you have the chance.

It has been absolutely eye-opening to see the “Swiss army knife” of skills that employees must demonstrate to overcome the challenges that a small charity faces on a daily basis. To name but a few, this could include trying to increase social media engagement, winning grants, and replying to enquiries from families who are going through incredibly challenging times. The added financial constraints and a huge responsibility to help your members brings with it increased pressure to get things right. Every decision has a direct impact on patients and their families, and making these choices under such tight financial limitations is a really difficult task to face each day.

I have also learned how powerful it is to have a team around you. In my normal life, I work closely with a rare diseases team of 15 incredibly talented and committed individuals. I am so lucky to be part of that powerhouse of a team, who gives me energy and supports me on a daily basis. At the CGD Society, Claire works on her own a lot of the time, with support from a handful of other dedicated individuals who can lend advice and resource. I have been so inspired by how Claire keeps herself productive, focused and motivated. It has been great to be able to give Claire another pair of hands, albeit for a short time, and a second person to bounce ideas off.

I return to Costello with a refreshed commitment to bringing treatments to patients with rare diseases. Once again I have been blown away by the passion and kindness of the rare diseases community, and feel so blessed to have been given this opportunity to experience the charity sector with such fantastic colleagues and collaborators.

I wanted to end by saying an enormous thank you to Claire, Adelle, Geoff and Andrew for making me feel so welcome. I cannot wait to continue to collaborate with CGD Society in my new role as a trustee."