Recommend your health professional here

 

HSP Medical & Allied Health Practitioner Listings

 

Developing a community resource

“Where can I find a neurologist who understands HSP?”

“Can you recommend a physiotherapist with HSP experience?”

With HSP such a rare and little-known disease, questions like this are very common. Getting a satisfactory answer or any answer to such questions is often not easy.

 

 

Let us know!

So we are asking you, the HSP community, to let us know if you have a medical or allied health professional you would recommend to other HSPers:

  • GP/family doctor
  • neurologist or rehab physician
  • physiotherapist or neuro-physiotherapist
  • occupational therapist
  • orthotist or podiatrist
  • genetic counsellor
  • or other mainstream medical or paramedical professional who knows and understands HSP and HSPers.

Please let us know! Here’s how: Using the Comments box at the end of this article, type in the following information:

  1. practitioner name:
  2. type of medical professional:
  3. contact details/location:
  4. comments e.g. what makes them good.

and click ‘Submit’. If you would prefer to use e-mail, send us the same 4 pieces of information to <[email protected]>.

 

 

Developing listings

We will collate your replies and put the listings on this website, letting you know when we do so. Over time, let’s hope we can build a resource that makes it easier for people in the HSP community to locate and contact medical professionals who can add value.

It will only take a few minutes to do… and may be of huge benefit to others in the HSP community. Do it now, fill in the Comments box below with your recommendations and information on medical professionals.

Your privacy and anonymity are guaranteed. We will publish your recommendations anonymously.

 

Thank You!

3 comments

  1. I am from South Germany (Europe-Landau/Pfalz). I would like to have contact with others with the Rare Disease HSP (I have SPG7)

    1. Hi Barbara,
      I have recently been diagnosed with HSP-7 also. I live outside Boston, Ma and also would like to communicate with others that have this disease. I am currently getting Physical Therapy from a neuro Physical therapist which is helping me walk and helps to retain my balance. I am in touch with other research organizations to try to find clinical trials,etc. in an effort to find a cure. I am 72 years old and was a physical education teacher who also was an equestrian and special ed advocate. I never was affected by this disorder until I was 71, and the only one in my family that has it.
      I hope you are only in the early stages of this disorder. Do you have other members of your family that have it? I look forward to your reply.

      Mary

  2. Hello. My sister had HSP. She has not been genetically tested as she is afraid. Shannon is 48 and struggling at the moment. I’m trying to learn more and perhaps being her sibling can be tested to assist with possible medical researching.

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