Pledge for Patients! + info. via Rare Disease UK

In this update:

1. Launch of our new campaign: Pledge for Patients!
2. Communications & PR for Small Patient Groups workshop
3. Champions of Hope Community awards
4. Webinar: How to Discuss Genetic Diseases with Your Loved Ones

Pledge for Patients!

We've got some exciting news today! Rare Disease UK, Genetic Alliance UK and SWAN UK have joined forces to launch our first ever joint campaign.

We've created a pledge card to ensure that whoever forms the next Government will be committed to ensuring patients affected by rare, genetic or undiagnosed conditions get access to the right care and treatment.

By signing the pledge card we will have a signed commitment that we can use to hold each elected member to account.

In order to get MPs and parliamentary candidates (the candidates who hope to be elected) to sign up to the pledge card we need your help. Please contact your MP or parliamentary candidate and ask them to sign the pledge card.

We have a dedicated website: with more information and tools to help you contact your local representative - including template letters. At the moment the campaign is focused towards representatives from the Conservatives, Labour and Liberal Democrats. However we can also help with candidates from the Green Party, Scottish National Party, etc too. Just get in touch!

We are also asking our member patient organisations to please promote the Pledge for Patients campaign via email and social media using #pledge4patients

If you need any help or assistance please contact us at:■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■

Thank you for your help and support!

Members' news:

Findacure: Communications & PR for Small Patient Groups

As part of Findacure’s series of trainings for patient groups, the next workshop will be taking place on Friday, 17th April, on the topic of communications and public relations (PR).

The workshop will be a half-day event from 1:30pm to 5:30pm in central London (near Oxford Circus station). The day will explore different communications and PR methods patient groups can employ to raise awareness of their condition and work. Throughout the day, there will be short group discussion sessions where delegates will be able to share their own experiences and work together to apply the advice from the day to their own organisations.

For more information, please follow the link:

If you would like to attend, please email Flóra ( by Sunday, 5th April 2015.

2015 Tribute to Champions of Hope Community Nominated Awards

Global Genes is asking the rare disease community to look amongst themselves to identify and nominate agents of change, agents of innovation, and individuals who are working tirelessly on behalf of those affected by one of the 7,000 rare diseases impacting over 350 million people worldwide.

This is our opportunity as a community to come together to celebrate and honour those who are setting higher standards, making significant changes and fearlessly attacking challenges differently. Join Global Genes in recognising these incredible individuals by nominating your Champion of Hope today.

All nominees will receive a special recognition gift, and those who win, will be asked to join Global Genes in Southern California in September at the Tribute To Champions of Hope Gala. Winners must be available Friday, September 25 and Saturday, September 26.

For more information and to find out the categories for nomination, please follow the link: Award nominations are open through to April 30, 2015.

Global Genes webinar: How to Discuss Genetic Diseases with Your Loved Ones (April 1st, 6pm)

Join members of the rare disease community to learn more about the basics of the underlying genetics of rare disease and the strategies and advice to discuss them with the ones they love. Panelists will share strategies they have used to explain genetic disease, challenges they faced, and helpful resources. Hear from:

Jenna Miller, MS, Associate Genetic Counselor, Recombine
Cynthia Frank, Director, Public Affairs & Meetings, National Gaucher Foundation
Janet Mills, Trustee & Patient Advocate, CureCADASIL Association
Michelle Fox, MS, LCGC, Genetic Counselor, Consultant, Invitae
Moderator: Daniel Levine

Register here: