A rare organisation in ten steps

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How to set up an organisation for a rare disease or rare disorder in ten steps

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A rare organisation in ten steps

  1. 1. VanBetuwAdvies /Annet van Betuw Trainer workshops social media | Coach non-profit organisations | Blogger | Speaker on social media and rare diseases Initiatior and former president of the European Chromosome 11q Network A rare organisation in ten steps | Annet van Betuw, 9. November 2010 Or : ten steps that help you in setting up an organisation for a rare disease or disorder
  2. 2. Just ten steps?Yes, it is possible. But it is a manual.Yet a manual based on knowledge and experience. Is it still needed? Hmm. Hard to say ifYOU need it.There are lots of (management) books, courses and blog information about it. My 10 steps differ; I react to questions that I come across on rare diseases and disorders! I am so stubborn to think that this is a little bit different, just because it is rare. Why?To share my knowledge and experience with you.To receive your additions.To make the next step together again. Reactions? Please! Send your e-mail to info(at)vanbetuwadvies.nl, tweet me (twitter.com/annetvanbetuw) or get in touch via Hyves, LinkedIn of Facebook. You can find more info (mostly Dutch) at www.vanbetuwadvies.nl A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  3. 3. 1.Why  Be critical to yourself: why do you actually want to do it? A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  4. 4. THINK FIRST, BE HONEST  I am alone  Did you search well? It is about a rare disease or disorder. Dit you search enough in other countries?  I cannot find medical support  Did you search well? It is about a rare disease or disorder. Dit you search enough in other countries?  Nobody knows where to find information  Who is nobody?Your doctor, your neighbour, your grand nephew? Did you ask it to the right people and searched on the Internet?  There is an organisation, but I do not like those people  Do you think that you ever will raise money if there already exists another organisation? You are not unique anymore, even though it is about a rare diseasese. Just go and talk to those people. Maybe they turn out better than you thought.  There are only other organisations abroad.  A. I do not speak English, so I do it in my own country. ▪ Go to a course and learn English! Do not invent something that is already there  B.They do not speak English, it is up to them to get in touch ▪ Are you serious? A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  5. 5. 2.What is your goal?  Meeting  Sharing experiences  Stimulating research  Contributing to emancipation, recognition A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  6. 6.  Do you only want to meet other people? It is not needed to start a formal organsation to do that.Getting together in the zoo of organising a family day can be enough in that case. A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  7. 7. Well, enough for the negative remarks I think… I am sorry, I just had to make them. Now that you came this far, we continue positively. A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  8. 8. 3. Make a plan  And formulate ‘what, why, how, who, when, where’. So:  Goal  Why  Who  Strategy  Communication  Actions / appointment list  Time planning  Financing  Evaluation A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  9. 9. 4.The board  A strong board is important. It does not need to be big. A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  10. 10.  But:  Take care that you have a board that you can trust on. Not only concerning content, amicable, but also in the work.  Take care that you have a board that knows how to get things done. It is not a coffeeclub, you want to achieve something.  People who want to join but do not have time, should not be a board member.Yet remember them well, because, who knows, maybe they have time in a while of they want to help with ad-hoc activities. A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  11. 11. 4. Appointment list  An organisation lives or dies with making and keeping appointments. Do not be to fuzzy in this: just appoint the right person for keeping an appointment list up-to-date. A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  12. 12.  Of course we are optimistic and everyone is doing what we agreed, but it is always possible that sometingh comes inbetween. So:  Make a distribution of tasks and stick to it.  My opinion: patients / parents are ‘in charge’. Everyone else is supporting. Do you agree? Are you able to explain that to scientists and keep them to the appointments?  It is about a rare disease or disorder, so about a small and mostly vulnarable group.Therefore concentrate on things that you are able to achieve, limit yourself. Make appointments on headlines.  In these groups there is always understanding for your private situation.Take care that others know when you don’t have time at some moment or need some rest.They can organise support. Do you notice that you are not able to continue, stop.That is not terrible.  Do not get lost in endless meetings. Make sure that you have a strict technical chair, who does not mind to interrupt personal stories. A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  13. 13. 5. Scientific and medical support  Recognise the importance of scientific research; formalise this by raising a supportive group.  Note the difference between a doctor and a scientist  Go ahead with people who are willing to fix their appointments and execute them.  Support actively the scientific research, but do it on your conditions A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  14. 14. 6. Communication  Make a communication plan. Include:  Website / Blog  E-mailing  Flyer in pdf  Newsletter  Social media  Conference A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  15. 15.  Hints:  Do you not know much about communication? Recognise it and look for someone who does.  It is about a rare disease or disorder. Good chance that you will go abroad. In that case take care that your English is well enough ▪ Note for native English speakers: please give us time to think and talk in English. And for discussions: please, slow down and do not only discuss with other native speakers  A website or a blog must be up-to-date. Moreover, it is the base of your online profile.Take care that you are not depending on a webmaster, fill your own ‘content’ .  Use social media! Do not you know how to, get informed, train yourself  Do not send flyers to all doctors in your country, they will be landing on the pile or in the waste-paper basket  Check if , instead of a press release, you better make a blog and communicate it via social media. A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  16. 16. 6. Make it formal  Everything thought about and discussed? Make it formal, raise a foundation via the notary, register at the chambers of commerce.  Only offically registered organisations have a chance to receive subsidies or funding. (Of course you may formalise in an earlier stage than I point out here. Most important is: did you think about everything and discuss it?) A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  17. 17. 7. Money  Take care of having a financial expert in the board.  Make a budget  Find out if there are possibilites of subsidies or funding. A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  18. 18. 8. Attention for own experiences  Keep an eye on own experiences.You are the expert.  Are you a parent of a child with a rare disease or disorder? Observe well.  Generalise personal experiences.  People having the same or a similar disease or disorder, recognise each ohers experiences. Make notes. Generalise. A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  19. 19. 9. Conferences  Is your country too small, go abroad (go European if you are in Europe).  Take care of translators ▪ Misunderstanding: all Dutch speak fluently English.  Speeches and meetings during breaks are equally important ▪ Do not plan an overloaded programm. ▪ Give space for own experiences. Patients e.g. parents are ‘in charge’ now too.  Make a report in pictures and short notes. A rare organisation in ten steps | Annet van Betuw, 9. November 2010
  20. 20. 10. Evaluate A rare organisation in ten steps | Annet van Betuw, 9. November 2010

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