BUILDING AN EFFECTIVE PH ASSOCIATION

Getting Started

Learn About Who Your Association Will be Serving

To create an effective PH association, you must first understand the needs of patients, families, and medical professionals in your country. Address the following questions to ensure that the association you create benefits and serves the PH community in your country the best way possible.

Does a PH association already exist in my country?

YES: If an association does exist in your country, your efforts might be enhanced by collaborating with that group. Contact those leaders to learn more about how you can get involved and support the work that they are already doing. If the group’s headquarters is far from where you live, for example, you might discuss starting a support group in your area to further the work being done nationally.

NO: If you feel that your goals are too different from those of the established group, be sure to develop relationships with its leaders so that everyone recognizes the shared interest in ending pulmonary hypertension and supporting patients until a cure is found. Respecting the work that another established group is doing may help you define your priorities and possible areas of collaboration. Partnerships with other national associations will benefit your cause down the road.

How do I find people who are interested in my association?

At first, your biggest hurdle may be finding other people who know about pulmonary hypertension and the importance of creating support and finding a cure. PH is a lonely illness in many parts of the world due to a lack of awareness and very small patient populations. If you are a PH patient yourself, you may feel that your health creates an additional obstacle – you may not have the energy or ability to take on large promotional activities.

  1. Let them come to you
    The best way to get word out about your group may not be to find others, but to ensure that others can find you. Learn about the confidentiality laws in your country and, if possible, ask your doctor to provide your contact information to any patients he or she might encounter.
  2. Advertise in your clinic
    Try your best to get to know the other patients in your clinic. If your health center has a community board, ask to add a flier with your contact information to it in case a new patient is diagnosed with PH. In some clinics, you might be the only PH patient your doctor sees. If there are others, find an opportunity to meet regularly with them.
  3. Involve your doctor
    Several associations have been established by medical professionals seeking professional support and ways to improve patient care. Your physicians and nurses may want to help start a support group for you and the other PH patients they see and can help that group grow by referring new patients to it. An effective association can benefit the work of PH-treating medical professionals by providing education and professional connections. Having the participation of medical professionals in your group will also benefit you; medical professionals can offer advice and expertise as you create literature, and can use their knowledge to communicate with government bodies about the importance of approving treatments, funding research, supporting PH-treating centers, and making PH therapies available and affordable for patients in your country.
  4. Start talking about it!
    Contact local newspapers and media sources and share information about pulmonary hypertension at public venues like libraries, university campuses, your workplace – wherever you are known! Many communities don’t know what PH is until one of their members is diagnosed. Making people in your neighborhood aware of PH will help them understand your situation and will help them recognize symptoms in the future. Give yourself as much visibility as you can in your community and make your contact information available to them so that they can refer their acquaintances to you.


Next: Getting Started - Assess Your Resources and Understand the Rules and Regulations in Your Country >>
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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.