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#nspku

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poconnor<p>It begins: my first phone call from the surgery to confirm if I absolutely need my monthly <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> medicine “only it’s a bit expensive”.</p><p>Apparently, they plan to call to check this with me every month.</p><p>Going to head this off at the pass by getting my Clinic to write them a letter, and send them the <a href="https://pkutalk.com/tags/NSPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NSPKU</span></a> documents explaining pku to <a href="https://pkutalk.com/tags/GP" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>GP</span></a> surgeries 🤞🤞🤞</p><p><a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LivingWithPKU</span></a> <a href="https://pkutalk.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> <a href="https://pkutalk.com/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a></p>
Soheb<p>NSPKU - Phenylketonuria Future Potential Therapies</p><p><a href="https://videos.pkutalk.com/videos/watch/e7786e17-a9c4-4bce-859f-7f22cad8e9cc" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">videos.pkutalk.com/videos/watc</span><span class="invisible">h/e7786e17-a9c4-4bce-859f-7f22cad8e9cc</span></a></p>
Soheb<p>As much as I loved the NSPKU conference, I'm happy to be back home with a toaster that toasts toast to my standards.</p><p>The one at the conference looks like it would toast bread to a crisp, but then it was just lightly cooked?!?!?</p><p><a href="https://pkutalk.com/tags/nspku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>nspku</span></a> <a href="https://pkutalk.com/tags/NSPKUConference" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NSPKUConference</span></a> <a href="https://pkutalk.com/tags/NSPKU2024" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NSPKU2024</span></a> <a href="https://pkutalk.com/tags/nspkuconference2024" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>nspkuconference2024</span></a></p>
Soheb<p>Here are some of the photo albums of the NSPKU conference 2024:</p><p><a href="https://photos.app.goo.gl/g5jCVEKoUFAFAxv96" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">photos.app.goo.gl/g5jCVEKoUFAF</span><span class="invisible">Axv96</span></a> - what's in the pipeline</p><p><a href="https://photos.app.goo.gl/DtCGiA39D1sQuqyB8" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">photos.app.goo.gl/DtCGiA39D1sQ</span><span class="invisible">uqyB8</span></a> - mRNA therapy treatment </p><p><a href="https://photos.app.goo.gl/bwgCwNRpxd5xk2Ls9" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">photos.app.goo.gl/bwgCwNRpxd5x</span><span class="invisible">k2Ls9</span></a> - European Guidelines</p><p><a href="https://photos.app.goo.gl/ZbdW5YbXuYgKDZNT9" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">photos.app.goo.gl/ZbdW5YbXuYgK</span><span class="invisible">DZNT9</span></a> - NSPKU Campaign 2024</p><p><a href="https://pkutalk.com/tags/nspku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>nspku</span></a> <a href="https://pkutalk.com/tags/NSPKU2024" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NSPKU2024</span></a> <a href="https://pkutalk.com/tags/NSPKUConference" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NSPKUConference</span></a> <a href="https://pkutalk.com/tags/nspkuconference2024" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>nspkuconference2024</span></a></p>
Soheb<p>It hasn't quite hit me that I'll be going to the NSPKU conference this Friday...</p><p><a href="https://pkutalk.com/tags/NSPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NSPKU</span></a> <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a></p>
Soheb<p>To all my PKU folks in the UK - the NSPKU has a *great* section on foods that are suitable for PKU folks as well as the relevant exchanges.</p><p>Please check those docs here: <a href="https://nspku.org/documents/?wpdmc=dietary-info" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">nspku.org/documents/?wpdmc=die</span><span class="invisible">tary-info</span></a></p><p><a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pku</span></a> <a href="https://pkutalk.com/tags/phenylkeotnuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylkeotnuria</span></a> <a href="https://pkutalk.com/tags/lowprotein" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>lowprotein</span></a> <a href="https://pkutalk.com/tags/nspku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>nspku</span></a></p>
poconnor<p>A lovely <a href="https://pkutalk.com/tags/Friday" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Friday</span></a> afternoon, and I plan to enjoy <a href="https://pkutalk.com/tags/spring" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spring</span></a> sunshine and <a href="https://pkutalk.com/tags/celebrate" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>celebrate</span></a> the success of my first <a href="https://pkutalk.com/tags/kickstarter" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>kickstarter</span></a>.<br>Also, paid for the <a href="https://pkutalk.com/tags/NSPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NSPKU</span></a> conference in May &amp; look forward to seeing everyone.<br>Brief bitof light reading below if you’re interested, otherwise a few photos of to send you into the weekend with a smile<br><a href="https://pigpen.page/kickstarting-the-red-hat-stories/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">pigpen.page/kickstarting-the-r</span><span class="invisible">ed-hat-stories/</span></a></p>
Soheb<p>One of the benefits of having a new house is that I get to register with the NSPKU charity all over again! 🥰</p><p><a href="https://pkutalk.com/tags/NSPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NSPKU</span></a> <a href="https://pkutalk.com/tags/charity" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>charity</span></a> <a href="https://pkutalk.com/tags/movingHouse" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>movingHouse</span></a> <a href="https://pkutalk.com/tags/house" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>house</span></a> <a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pku</span></a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a> <a href="https://pkutalk.com/tags/phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylcetonurie</span></a></p>